Updates on HUGS and HOPE Kids
(Parents, send updates here)

 IMPORTANT: Please do NOT send packages of cards to our office. 
Please mail individual envelopes to each specific child.  Addresses are provided for each of our kids
so they can receive your happy mail directly from you to their mail box. 

  Record what you mail on our Mail Stats page. (To help us send mail to children who need it.)

Click on the letter of the child's first name below, to go to the update. 

 

To see each child's photo and story, click on their name.

Adam G
Date updated: 9/25/2012
Age: 7
Diagnosis: Mitochondrial disease complexes 1 & 4/ Autism/ OCD/
Current email address: hopefay@charter.net
Update: Adam has enjoyed all the mail thank you! He is not eating any better so on Oct 2nd, he will go in for surgery for a G- Tube for feeding supplementation. Good news he gained a Baby Brother Rhyan on Aug 28th 2012 and is very excited! Please pray for his surgery to go uncomplicated! Thanks for ALL you do! God Bless

Alexander W
Date updated: 9/23/2011
Age: 14
Diagnosis: apraxia, restless leg syndrome
Current email address: ladykissendyl@comcast.net
Update: GRADUATE: SEPTEMBER 2011 Both Jonathon and Alexander are doing medically well. Neither have seen a Dr in some time and have been staying healthy. SO much in fact that I have gone back to work full time. I feel the time is right for them to graduate from Hugs N Hope. Once again thank for all your kindness over the years.

Amber M
new child - new child - new child - new child - new child - new child - new child - new child - new child - new child - new child - new child - new child - new child - new child - new child - new child - new child - new child - new child -

Andrew W
Date updated: 2/11/2011
Age: 8
Diagnosis: ALL
Current email address: anrewbw3@hotmail.com
Update: Andrew has been good. Had some sinus issues again this winter. But still going and having fun.

Andruw S
Date updated: 9/14/2011
Age: 13
Diagnosis: retinablastoma
Current email address: pat3kds@yahoo.com
Update: Just found out today that Andurw's vision may be getting worse in his right eye. Getting around at school is getting more difficult for him.He need alot of prayers and more cheer until he goes to the doctor in November.

Angel P
Date updated: 8/29/2011
Age: 9
Diagnosis: clear cell sarcoma, epilepsy,ocd,adhd
Current email address: stephoneyp@yahoo.com
Update: Angel's OCD is alot worse she keeps her hands fisted and washes them all the time. She is being homeschooled because of her bad learning dis. she still can't read or write so they are doing more testing. She is on her ADHD meds so she is refusing to eat and only weighs 50 pounds. She needs happy mail because she is now realizing that she is different when compared to kids her age. God Bless.

Aschdon B
Date updated: 7/25/2011
Age: 12
Diagnosis: sma type 2
Current email address: smamom2three@yahoo.com
Update: Aschdon is doing great health wise. He will be getting his next surgery August 25th. He is already asking when it is because his back and side is starting to hurt. Aschdon is going to be homeschooled again this year while his sisters remain in public school. Aschdon is also the Wyoming MDA State ambassador this year and has been loving his role.

Ariel M
Date updated: 9/2/2012
Age: 18
Diagnosis: intractable Epilepsy,cognitive impairment,
Current email address: gillinn7@msn.com
Update: Ariel's been having a lot of difficulties lately.She's been in and out of doctors and clinics.We are removing a med that is causing kidney stones and trying to find new ones to control her seizures.She's had a lot of tummy issues and problems.Please pray for her. This is the kids prayer page please stop by and hit like. http://www.facebook.com/#!/PrayForDanielMichaelAriel

Austin B
Date updated: 10/23/2010
Age: 11 yrs
Diagnosis: CP
Current email address: pedsrndt@yahoo.com
Update: Austin is going great!!! Going to school and Seizure activity is under control.

Austin G
Date updated: 4/29/2013
Age: 16
Diagnosis: ALL Leukemia, post TX issues- severe cellulitis, ear surg
Current email address: gotgatus@yahoo.com
Update: Austin's almost 4 yrs off TX & continued remission!Has post TX issues,hospitalized 10/12 severe cellulitis,another ear surgery 8/12 (needs another one)but overall doing well. Volunteers free time to give back by sharing his gift of music. U tube link: http://www.youtube.com/user/gotgatus FB Musician page: https://www.facebook.com/pages/Austin-Gatus/269704456451816?ref=hl Thank u 4 cont prayers!

Austin W
Date updated: 12/15/2009
Age: 14
Diagnosis: Biliary Atresia
Current email address: becca1974@hughes.net
Update: Austin has finally hit a growth spurt and is getting taller. This is making his tummy shrink as he has more room for his new liver. He has been struggling in school but still makes passing grades. Thanks to all for the holiday mail, gifts, and stockings. God bless each one of you and Merry Christmas.

Becky B
Date updated: 1/9/2013
Age: 18 1/2
Diagnosis: heart & Liver disease
Current email address: gcbbunny@sympatico.ca
Update: Becky has "graduated" to Adult Care clinics for both heart & liver disease at 2 different hospitals. Female issues are dealt with thru a High risk specialist & being closely monitored. She is now in her Second term of University & doing VERY WELL :) Her health is fairly stable, still tires easily & will fall asleep mid sentence! We'd like to thank everyone for the Christmas/New Years notes.

Bethany P
Date updated: 10/31/2012
Age: 18
Diagnosis: JRA, EPILEPSY, LUPUS
Current email address: chellie_37806@yahoo.com
Update: Bethany was able to grad hs.We are SO proud of her. She has been having some horrible knee pain. She has degenerative arthritis in it. She currently has a broken thumb & possibly a broken wrist on the same side. She could use some extra prayers & cheer right now. ♡♥

Braedon P
Date updated: 1/2/2013
Age: 11
Diagnosis: Ataxia-Telangiectasia
Current email address: jbpollmann@hotmail.com
Update: Braedon continues to do well. He got a motorized wheelchair this past fall and loves the freedom it gives him. Good news...He had a checkup with his oncologist last month and he remains in remission from lymphoma. New Address: Braedon P. c/o C. K., 118 Pine St., N. Tonawanda, 14120

Brianna BU
Date updated: 7/28/2012
Age: 17 years
Diagnosis: Canavan Leukodystrophy
Current email address: ydb739094@aol.com
Update: She continues to struggle with Kidney stones. CT scan shows her kidneys are functioning normally at this point so she will have a recheck in October. She continues to have a great summer an awaits June 1st to officially receive a step dad for I have recently gotten engaged.

Bryant W
Date updated: 9/6/2012
Age: 8
Diagnosis: Dravet Syndrome
Current email address: amyweasel95@yahoo.com
Update: Bryant began school 3 weeks ago. He had an increase in seizures over the summer and we have changed medications again. We are praying that the new drug (zonegran) will work. Thanks for the mail, he just loves it. His favorite show is blues clue and he loves handy dandy note books and colors. Thanks again for all your special mail!!!!

Caleb G
Date updated: 11/3/2010
Age: 11
Diagnosis: A.L.L.
Current email address: lilmsshaeshae27@yahoo.com
Update: Monday caleb got some to him devistating news. he was diagnosed with sever's disease in his right foot its a bone disease in the growthplate. caleb is currently casted to ease the pain but for the next 5 years he will be prone to be casted ALOT for this issue

Cameron S
Date updated: 9/23/2011
Age: 14
Diagnosis: Brain tumor
Current email address: yankee_cajun2001@yahoo.com
Update: GRADUATE: SEPTEMBER 2011 -- He is now 14 and taller than his mom! He continues his yearly checkups with his neurosurgeon and his 4 times a year checks with his endocrinologist. He has enjoyed all the happy mail that has been sent to him throughout the last 9 years. Thank you Hugs & Hope family for bringing him such cheer. We love you all!

Casey O
Date updated: 11/11/2012
Age: 15
Diagnosis: Spinal Muscular Atrophy; type 1
Current email address: caseyandcolinsmom@yahoo.com
Update: Casey has been doing pretty well in 10th grade. He has come a long way in using his DynaVox for communication. He's driving his power chair a bit more. He just had infusions to increase bone density. Looking forward to the holidays. He loves your cards, art work and jokes, thank you!

Charley T
Date updated: 9/7/2010
Age: 11 yrs
Diagnosis: Advanced Scoliosis
Current email address: prayers4charley@yahoo.com
Update: Charley has just lost her big brother (Brandon) on Aug 28, 2010 and is not doing well. She has a surgery scheduled for Sept 20. One of the bolts have came out of her rods in her spine and they need to replace the whole rod. This is going to be really tough on her because of just losing her big brother. She really could use alot of happy mail during this time.

Chayce K
Date updated: 9/5/2011
Age: 9
Diagnosis: Eosinophilic Esophagitis, Allergies, Seizures
Current email address: shaykyle528@yahoo.com
Update: Chayce has been hanging in there, he has dental surgery in June, he has been undergoing lots of testing for Mast Cell disease, diabetes, and Sleep Apnea, He will be having another surgery in Sept to have his tonsils and adenoids removed. He is excited to be starting school soon.

Colbie R
Date updated: 3/13/2012
Age: 11 years
Diagnosis: mitochondrial disease
Current email address: alonda21@hotmail.com
Update: Colbie continues to struggle with many issues related to her disease. She has been in and out of the hospital many times due to these issues. We would like to thank all of you for sending her cards as this really keeps her spirits up. Please continue to follow Colbie's Journey at www.caringbridge.org/visit/colbie

Colin O
Date updated: 11/11/2012
Age: 11
Diagnosis: Spinal Muscular Atrophy; type 1
Current email address: caseyandcolinsmom@yahoo.com
Update: Colin has been doing well in 6th grade.He still has school at home and sees the kids via interactive TV or Skype. He is using his bipap just about 24/7 for respiratory support. He loved Trick-or-Treating as a vampire! He is very happy and upbeat. He just had IV infusions for bone density. Thank you for the cards and art work and jokes!

Colton M
Date updated: 3/18/2013
Age: 16
Diagnosis: retinitis pigmentosa
Current email address: lrobbie@bak.rr.com
Update: Updated Interests.... Computer related anything League of Legends game mcDonalds Likes his 3DS Likes cool clothes He's just REELY COOL NOW! LOL XO, LAURA Mine Craft game

Connor B
Date updated: 4/14/2013
Age: 8
Diagnosis: terminal brain & spine cancer
Current email address: cancersucks12@gmail.com
Update: Connor had an MRI on 4/3/13. He relapsed. They are trying to catch up his vaccines before starting chemo. It'll be an oral chemo he takes every day until there is growth or he finishes the protocol (which I don't know when that is yet). Over last weekend he had a bad seizure, first in a few years. He is doing well overall, just depressed about the whole thing.

Danielle H
Date updated: 1/2/2012
Age: 12
Diagnosis: osteosarcoma,limb salvage,hearing impaired
Current email address: babyg979943@yahoo.com
Update: Danielle is doing well,lots of ups and downs.school has been very hard especially math.she gets leg lenths regurly and is having her 2 year scan and echo,hearing test so keep her in your hearts and prayers!Thanks for all the wonderful letters,she loves them.keep them coming she keeps all of them.HAPPY NEW YEAR WITH HUGS AND HOPE!!!!!!!!!!!!!!!!!!!!!!!!!! ;)

David B
Date updated: 4/16/2013
Age: 18
Diagnosis: Pseudotumor cerebrii/ICH
Current email address: betpj@aol.com
Update: David continues to receive IV iron routinely, which continues to help his medical problems and stamina. He continues to have Migraines, requiring multiple MD appts. weekly, as well as eye problems. We had a great appt. at the hematologist yesterday!!! David GRADUATES from High School in May...I can't believe the journey he has endured. He is a blessing to my life!

David S
Date updated: 12/20/2011
Age: 10
Diagnosis: Muscular Dystrophy
Current email address: ma-kayla-123@hotmail.com
Update: He Has A New Address 91 Albemarle St And Only That Address!

Dillion
Date updated: 8/18/2011
Age: was 9
Diagnosis: Hydranencephaly w/ severe DD
Current email address: okbabygirl20@yahoo.com
Update: It is with great sadness that we announce the passing of Dillion C. on August 9, 2011. His brother and sister would appreciate receiving sympathy cards in honor of their brother: Jakub (11-16-99) and Karen (2-09-01).

Dustin T
Date updated: 8/15/2011
Age: 16
Diagnosis: ADHD, ODD
Current email address: yugioh1414@yahoo.com
Update: Graduate: February 2011

Elizabeth I
Date updated: 11/1/2012
Age: 15
Diagnosis: CP
Current email address: bettinagary@yahoo.com
Update: Elizabeth had two surgery one on hand to release it one out of the three that will be done on back need y'all help my family had so much going on their are several wish groups on I village drop a line to them Elizabeth wants to go to beach and Christian is having a real hard time thinking it should have been him not carrol cause he turned on stove any of the groups just not make a wish.

Elizabeth S
Date updated: 2/27/2013
Age: 15
Diagnosis: different
Current email address: muffin0033@yahoo.com
Update: Elizabeth's eye test did not go well. Her sight has gotten worse. She will have an MRI and other tests in March. Her family is very worried and requests prayers. Notes of encouragement for mom Jenn would be appreciated.

Emalee K
Date updated: 5/3/2013
Age: 6
Diagnosis: Stage 4 neuroblastoma
Current email address: kayleebryn@verizon.net
Update: Emalee has recently been seen by the late effects follow up team at Sloan. She seems to be doing well, on track with height and weight, thyroid levels and EKG were good as well! She is now waiting to be seen for a neuropsych evaluation and also for an appointment with her hematologist to discuss options about her blood clot. Her next neuroblastoma scans are scheduled for June.

Emery B
Date updated: 6/3/2010
Age: 5
Diagnosis: lung transplant-rejecting
Current email address: threeglittergirls@yahoo.com
Update: Emery is enjoying summer with his 3 big sisters. He started on some new medications that seem to have slowed the progression of his lung rejection. He is talking more, and eating by mouth better too!

Emilio R
Date updated: 2/13/2012
Age: 7
Diagnosis: acute Lymphocytic Leukemia
Current email address: mireyasol@comcast.net
Update: Emilio is doing well. In remission and recovering from side effects. He is happy to only go to cancer clinic once a month. Will be "graduating" soon from Hugs and Hope!

Emma
Date updated: 9/28/2011
Age: 10 years
Diagnosis: SMA type 1
Current email address: bethml@fuse.net
Update: Emma has had a busy summer. She went to see Big Time Rush and New Hollow concert 2 times. She really loves her music right now. She has been healthy and doing well. Thanks!

Eric A
Date updated: 4/1/2013
Age: 10
Diagnosis: Cystic Fibrosis
Current email address: emilyspeanut@aol.com
Update: Eric was sick for most of the holiday this year. He has just now gone back to school. During this time he was on so many new medications that reacted poorly with his health. He is currently on an upward swing and we could not be happier. He has decided to go for a Guiness Book record and collect the most silicone bracelets as he can! We are so proud of his ambitions!

Ethan S
Date updated: 12/29/2012
Age: 10
Diagnosis: Dandy Walker Malformation
Current email address: mamastirls25@yahoo.com
Update: Ethan is doing well and loves to draw and model with clay. I need to update the boys sizes, Ethan is a 10/12 and Dalton is a 8/10. The boys love to play with hot wheels cars and dinosaurs and they recently got a Wii for Christmas. They would love some Happy Mail and they are currently in 2nd and 3rd grade.

Eva Paige S
Date updated: 11/27/2012
Age: 4
Diagnosis: Global dev. Delays, Microcephalic, Seizure Disorder,
Current email address: angeque143@yahoo.com
Update: Eva will be 5 on Dec. 4th. The past few months Eva made progress verbally and physically. She is now beginning to have more seizure activity. We have good days and bad. She still loves her Mickey and Minnie along with music and handheld games. We love getting our happy mail! God bless each of you who take that time for her.

Hosanna B
Date updated: 10/14/2009
Age: 10
Diagnosis: Neuroblastoma
Current email address: merryharts@peoplepc.com
Update: Hosanna is doing great. She seems more active than usual lately, trying to talk and smiling a lot.

Jacob S
Date updated: 8/13/2010
Age: 8
Diagnosis: spina bifida, brain damage
Current email address: my3sonshines@centurytel.net
Update: Jacob celebrated his golden birthday on the 8th. Summer school just ended, which he really enjoyed. Medically, Jacob is doing amazing. He will be having botox at the end of the month.

Jasmin M
Date updated: 6/6/2010
Age: 8
Diagnosis: CP, Microcephelaly
Current email address: mr_mcwilliams@hotmail.com
Update: Jasmine is doing well and has been enjoying the school year. She is looking forward to her 9th birthday coming up in August. She enjoys listening to the radio and playing with her light up and musical toys. She is taking more of an active role in attempting to stand which has received much praise from her therapist.

Jennifer S
Date updated: 8/24/2010
Age: 6
Diagnosis: Myopathy, Failure to Thrive
Current email address: melcody2003@yahoo.com
Update: Jennifer is doing fantastic with eating and gaining weight lately! She is now diagnosed with PICA (eating non-edible objects). This may be due to an anxiety disorder and obsessive compulsive disorder. Going to be starting with a new therapist to help with these issues. She starts kindergarten soon, hoping it is a smooth transistion for her!

Joanna S
New child, new child -- new child New child, new child -- new child New child, new child -- new child New child, new child -- new child New child, new child -- new child New child, new child -- new child New child, new child -- new child New child, new child -- new child New child, new child -- new child New child, new child -- new child New child, new child -- new child

Jonathan A
Date updated: 12/14/2009
Age: 16
Diagnosis: brain injury, epilepsy
Current email address: jofodo@comcast.net
Update: Jonathan has been enjoying the Christmas season at home and going to parties. We have put Jonathan on a new medication which helps some but causes some behavior problems; we are now trying to monitor and adjust his medication. Jonathan really looks forward to receiving Hugs and Hopes mail; it brightens his day!

Jonathon W
Date updated: 9/23/2011
Age: 16
Diagnosis: Unknown Genetic Syndrome, development and growth delays, pto
Current email address: ladykissendyl@comcast.net
Update: GRADUATE: SEPTEMBER 2011 Both Jonathon and Alexander are doing medically well. Neither have seen a Dr in some time and have been staying healthy. SO much in fact that I have gone back to work full time. I feel the time is right for them to graduate from Hugs N Hope. Once again thank for all your kindness over the years.

Jordan Michael H
New child - New child - New child - New child -New child - New child -New child - New child -New child - New child -New child - New child -New child - New child -

Joshua A
Date updated: 12/21/2010
Age: 12
Diagnosis: Acute Lymphoblastic Leukemia
Current email address: b9stome@aol.com
Update: Joshua will be seeing the doctor on Tuesday the 21st of December. He has has a cough over and over again, he has been on antibiotics every other month. While he is on them he doesn't cough at all, but once off for about a week he's back coughing. I'm not sure what they will want to do this time. The last time he was at the doctor they said maybe he had bacteria in his lungs.

Josh W
Date updated: 8/2/2011
Age: 14
Diagnosis: ROHHAD
Current email address: joshuaalanw@yahool.com
Update: Josh's health has been pretty stable lately, using his ventilator and diaphragm pacemakers, growth hormone & testosterone injections, etc. He has enjoyed the summer, sleeping later and going to the movies with his day nurses. During our short family vacation, he even got to go to the coast and fish! He looks forward to his last year in junior high school, which starts in less than 3 weeks!

Julianna Elizabeth R
Date updated: 4/10/2013
Age: 8 1/2 years old
Diagnosis: Suspected Mito and Epilepsy
Current email address: millierodriguez1125@gmail.com
Update: Julianna has been going through several seizure meds., we are just keeping her in continued prayer. Her new favorite is Brave. She is now an Aunt! That truly is just Jesus giving us manna in a time of searching. Blessed to be looking at another birthday with her. Thank you ALL for your reaching out. THANK YOU.

Kady L
Date updated: 6/9/2010
Age: 12
Diagnosis: Glutaric Acidemia
Current email address: teach1970@hotmail.com
Update: Kady had a couple of low blood sugars in April that put her in the hospital, but all in all, she's doing pretty good. The doctor's are wanting to do another eye surgery (update to come). She would like everyone to know that she is one of only THREE students in her class with a 4.0 GPA. She has overcome many obstacles that the doctors said she wouldn't be able to do!!! I'm a proud mom! THANKS!

Kaitlyn C
Date updated: 12/8/2011
Age: 15 years
Diagnosis: Brain Tumor
Current email address: erkellyc@yahoo.com
Update: Kaitlyn is currently in the hospital in Milwaukee. looking at another possible brain surgery.

Kaitlyn Marie S
Date updated: 2/7/2013
Age: 15
Diagnosis: double heart transplant and now kidney failure
Current email address: karatemom05@frontier.com
Update: Kaitlyn has been enjoying her Freshman year so far. She has been pretty healthy--just a bout with influenza. :( Thank you for the cards and letters...she really enjoys them!

Kaitlyn Rebekah M
Date updated: 1/4/2010
Age: 16
Diagnosis: Common Variable Immune Def
Current email address: xan86@bellsouth.net
Update: Kaitlyn has had a good winter so far. She is still doing her weekly chemo treatments and is in 10th grade. She has her drivers license and is taking her second year of Spanish. She goes back to the doctor on Jan. 26th and for more blood work. Thank you for ALL the Christmas cards and Birthday cards!!!! Happy New Year!!!!!!

Karly Z
Date updated: 6/9/2010
Age: 15
Diagnosis: epilepsy, ovarian cancer
Current email address: silentlyeating@gmail.com
Update: Graduate - June 2010

Katia S
Date updated: 1/26/2013
Age: 13
Diagnosis: leukemia/gvhd
Current email address: tmsol87@aol.com
Update: Katia is turning 13!!! This is 10 years beyond her original diagnosis date. Katia has crossed many hurdles and continues to have health issues due to her gvhd (rejection of transplant) but we are extremely grateful for her life. Her website continues to be updated w/ info. THANK YOU for your prayers and encouragement. Love, Tracy (Mom)

Katie J
Date updated: 1/28/2010
Age: 9
Diagnosis: cerbral palsy,hydrocephlis
Current email address: rose003002@yahoo.com
Update: katie is in the process of getting a speech machine(called a dynovox). she loves learning how to use it(she loves all things computer). it has already helped increase her vocabulary.she had begun to pull her hair out,maybe sensory imput but we think mostly from fustration. the drs. and speech therapy hope the easier it becomes for her to communicate the less "melt downs" she will hopefully have.

Keegan K
Date updated: 9/5/2011
Age: 4
Diagnosis: Eosinophilic Esophagitis, Arachnoid Cyst of Brain, Clubfeet
Current email address: shaykyle528@yahoo.com
Update: Keegan is hanging in there. He has had an eventful Summer, He had dental surgery in June due to damage from reflux, He also had fenestration of his brain cyst. In two weeks he will be going back for a 6th relapse in his clubfeet, cating and a wheelchair are in his future. On a positive note, He is starting school On Sept 6th!

Kevin W
Date updated: 11/17/2009
Age: 11
Diagnosis: Heriditary Spherocytosis
Current email address: ncmommy72@aol.com
Update: Kevin is doing well. He might have to go on medication for his ADHD. Its interfering with school.

Kimberley G
Date updated: 2/9/2012
Age: 18
Diagnosis: cp seizures
Current email address: geislermom@hotmail.com
Update: Wish this update was better news. The end of December and Jan. Kimmie was in the hospital for high sodium lvls. and seizures. When we came one in Jan. it ws under hospice care.

Kody C
Date updated: 10/3/2012
Age: 10
Diagnosis: Hemimegalencephaly
Current email address: Randiscan@yahoo.com
Update: Kody is doing well. He had a couple months of a bunch of tests run but all came back good. He is the happiest little guy ever!!!! He is still trying hard to get back to walking with a walker since his hip surgery and broken femur. He loves getting mail!!! Thanks to all who think of him!

Latosha S
Date updated: 2/7/2011
Age: 16
Diagnosis: bardet biedl
Current email address: pamelasullens@yahoo.com
Update: latosha is having a surgery on wednesday 9 of this month and she hope not she have caner after the surgery,she need praying, she like justin bieber.

Lauren W
Date updated: 4/19/2013
Age: 17
Diagnosis: Rett Syndrome
Current email address: Softbreezes60@aol.com
Update: Lauren has been hospitalized since Wednesday with Pneumonia. She is doing better but will sent home today with ten days of antibiotics.... Her oxygen saturation s and potassium levels were down but those are both up to normal ranges again. Thank you all for the happy mail, well wishes and love sent, it is appreciated more than you will ever know..

Lisa B
Date updated: 4/16/2013
Age: 10
Diagnosis: 3 open heart surgs/2 strokes
Current email address: betpj@aol.com
Update: THANK YOU for all of Lisa's BD wishes! She was recently diagnosed with seizures and has had horrible side effects from the meds. Her hypertension and migraines continue to be a problem. She has a cardiology appt in a few days and we NEED things to be stable! Her new leg brace and shoe lift have helped with her falls. We could use some positive thoughts and prayers!

Luke T
Date updated: 5/2/2013
Age: 6
Diagnosis: PKU, Chiari, Ehlers Danlos, osteoporosis
Current email address: 8teats@atlanticbb.net
Update: Luke has surgery scheduled Monday.He is very nervous.Please pray for him.Luke has enjoyed his happy mail more than I can put into words.Thank you all so very much from the bottom of my heart.Please say a prayer for Deanna,Lukes sister,as she is having many health problems as well right now.Sending each of you hugs and love from Maryland! Pam

Maddison W
Date updated: 4/1/2013
Age: 13
Diagnosis: ewings sarcoma
Current email address: haws_2@msn.com
Update: Maddy is 9 years in remission this month and has been doing good. Other than braces for her teeth she has been having pretty painless year!

Mason M
New child. New child. New child. New child. New child. New child. New child. New child. New child. New child. New child. New child. New child. New child. New child. New child. New child. New child. New child. New child.

Matthew C
Date updated: 4/22/2013
Age: 8 1/2
Diagnosis: Mitochondrial Disease
Current email address: tlcech@charter.net
Update: We will be having a big follow up meeting in Boston in a few weeks to discuss Matthew's care plan. He is still on 22hrs/day formula feeds through a J tube. He has tolerated a little increase in fluids but not enough to grow properly. He is also having new issues with his heels. He has a boney overgrowth on both feet.On a brighter note, he is looking forward to finishing up third grade soon :)

Mattie L
Date updated: 6/9/2012
Age: 12
Diagnosis: Mitochondrial Myopathy Klippel Feil
Current email address: shellyplus4@gmail.com
Update: Mattie is struggling with an war infection and thrush that we can't seem to clear up. It is being suggested that we check in with immunology to see if there is an immune reason that the infections won't clear up. You can follow her updates on: http://www.caringbridge.org/visit/mattielorenzen You can read updates in her own words at: http://memosfrommattie.blogspot.com/

Maurquez Devynn T
Date updated: 5/8/2013
Age: 8
Diagnosis: A.L.L.
Current email address: furtilemom@yahoo.com
Update: Q doing well. finished C.A.R.M. therapy. Amazing results! had to have a new port put in, old one stopped working. Surgery went well. Growing taller and slimmer. God Bless each and everyone.

Maya O
Date updated: 12/1/2012
Age: 13
Diagnosis: Mitochondrial Disease
Current email address: mom2maya@centurytel.net
Update: Maya has been doing well, but had an increase in pain over the past couple months. We are planning to see the surgeon after the holidays to see if there is anything they can do to help her. She is looking forward to the holidays and has loved all ther happy mail! Thanks!

Melorah M
Date updated: 4/30/2013
Age: 12
Diagnosis: Dravet Syndrome
Current email address: mcmahanj@mac.com
Update: Melorah was hospitalized again in April for 5 days due to status seizures. She has several more appointments coming up to see if we can come up with answers and a solution. She LOVES all the cards! Thank you so much!!

Michael H
Date updated: 6/12/2011
Age: 10
Diagnosis: ROP (blind) sensory integratio
Current email address: cheerprincessmom@gmail.com
Update: Michael had started doing pretty well and then started having problems at school. He was getting in trouble for laughing out loud and straing into space....something he has done since birth and has no control over. He just under went an EEG test to rule out Gelastic seizures but everything was normal. So we are still at a stand still.

Michele Joyce L
Date updated: 5/30/2012
Age: 7
Diagnosis: ALL Leukemia
Current email address: new@new.com
Update: new child

Nate H
Date updated: 12/2/2009
Age: 7
Diagnosis: EGID amoung others
Current email address: ashlie.perry@charter.net
Update: Nate is still recovering from Pnemonia as a result from H1N1. He's also going through his first Christmas without his parents being together. Please pray that he continues to recover and that he has a Merry Christmas. Love, Ashlie Nate's Mom

Nicholas L
Date updated: 9/28/2011
Age: 9 years
Diagnosis: SMA type 1
Current email address: bethml@fuse.net
Update: Nicholas has had a great summer with camping, playing games, playing Miracle League baseball and power soccer. He has been doing well. Thank you!

Nicole T
Date updated: 10/18/2012
Age: 14
Diagnosis: hydranencephaly
Current email address: rtrease@nntc.net
Update: Nicole has been battling with bronchial pneumonia, urinary tract infection and finally a yeast infection. It has been a long 2 months of trying our hardest to keep her home and out of the hospital. She will begin home based school the first week of November. Her health is to fragile to remain in a classroom setting any longer. Please remember Nicole in your thoughts and prayers.

Peyton H
Date updated: 10/21/2011
Age: 7
Diagnosis: Leukemia
Current email address: navaraf@aol.com
Update: Peyton has been in remission since about six weeks post diagnosis, so she has been "clean" for over a year. Peyton is doing well right now and LOVES getting happy mail. All the cards, letters, and pictures have been a real blessing.

Rebecca B
Date updated: 7/12/2010
Age: 8
Diagnosis: Batten's Disease
Current email address: qajchook@gmail.com
Update: Just wanted to let you know that Becca passed away this evening (7:11PM, 7/11/2010) surrounded by the whole family. We could not have asked for a more peaceful death. Love, Lisa

Robert E
Date updated: 2/8/2013
Age: 13
Diagnosis: Mitochondrial Disease/Epilepsy
Current email address: wjjrfl@gmail.com
Update: Robert is doing well. He has a cold right now though. He is enjoying tennis w/Special Olympics. Robert continues with PT,OT and Speech Therapies. He has taken a huge growth spurt and gotten very tall. This causes him increased pain and fatigue. Thank you for all of the cards.

Ryan B
Date updated: 3/1/2011
Age: 14
Diagnosis: Spinal Muscular Atrophy
Current email address: loraberhar@yahoo.com
Update: Ryan is doing well. He is currently a freshman in highschool. Please keep him in your prayers as spring is usually a rough time for him. He seems to get sick the most in spring time!

Sarina S
Date updated: 4/2/2013
Age: 16
Diagnosis: Hodgkins and many other
Current email address: cloudraven@verizon.net
Update: Sarina is still having so many issues. She have new finger splints. We are waiting to get new leg braces. We are very happy to say that she did get an IPAD for school. The generosity of our synagogue allowed us to get the IPAD. She is in so much pain, it is very hard to watch.

Savannah R
Date updated: 9/16/2011
Age: 18 yrs.
Diagnosis: Cystic Fibrosis
Current email address: youthful64@aol.com
Update: Thank you to everyone who remembered Savannah's B day. Savannah was admitted to the hospital Sept. 13th with a lung infection. Thank you for all the continued support. Take Care, Julie (Savannah's Mom)

Shelby T
Date updated: 4/1/2013
Age: 20
Diagnosis: cp and nbra
Current email address: sassylg73@yahoo.com
Update: Shelby doing pretty good, getting taller

Sierra Journey F
Date updated: 11/22/2011
Age: 10
Diagnosis: SMA,Kidney & Lung Disease
Current email address: pixiechick1414@gmail.com
Update: Sierra is just about 3 months post surgery and is doing wonderful except she is not fully back in her own wheelchair just yet .. still needing encouragement for her mobility again but she is still doing so good! Happy Holidays!

Sydney N
Date updated: 12/6/2010
Age: 9
Diagnosis: Dravet syndrome
Current email address: hopeforsydney@hotmail.com
Update: Sydney has had terrible month, her school IEP was violated and they put her on teh 8 foot monkey bars, she fell off and broke her shoulder in a way that it can not be casted, so she has been completely sedated since Nov 9 trying not to have seizures so her bone can heal....she missed all of thanksgiving, I just hope she does not miss Christmas!!!I hope that she does not regress too much!luv mial!

Tabitha M
Date updated: 6/6/2010
Age: 8
Diagnosis: CP, Hydrocephalus
Current email address: mr_mcwilliams@hotmail.com
Update: Tabitha has been doing well in school and has graduated to the third grade. She has been making monthly trips to Columbus to keep an eye on her shunt pressure and has been stable since April. She has been enjoying the school days but is happy to see summer come and she will soon be out in the pool splashing up a storm. She is looking forward to her 9th birthday in August.

Test T
Date updated: 9/4/2012
Age: 12
Diagnosis: test
Current email address: test@test.com
Update: testing

Thomas G
Date updated: 12/18/2012
Age: 16
Diagnosis: Bethlem myopathy
Current email address: goodwintrishann@yahoo.com
Update: Thomas is doing okay. No sickness lately but still can't walk

Tiara Marie B
Date updated: 9/2/2011
Age: 15
Diagnosis: diabetes type 1, uncontrolled sezure disorder
Current email address: cuddlebugzx2@aol.com
Update: Tiara had a pretty good summer. She spent a lot of time camping with her family since we were camp host for 2 1/2 months. Her blood sugar numbers have slowly been coming down. She has been doing alot better remembering to check her blood sugars and taking her insulin. She is going in to the 10th grade this year and she is looking forward to a new school plan with a new smaller school one on one.

Tyler T
Date updated: 4/28/2013
Age: 12
Diagnosis: rhabdomyosarcoma stage4
Current email address: turpin10648@gmail.com
Update: Tyler has been hurting his jaw and leg he has been crying hurting.contacted Doctor Rodriguez’s was out of state will be back on Wednesday.will contact us more about Tyler’s surgery by the end of week.tyler is in bad shape surgery trying to set surgery up in maryland may 31 ,jaw replacement . this will be 57 surgeryies for tyler prayers needed

Zachary T
Date updated: 5/1/2013
Age: 15
Diagnosis: Duplication 15q
Current email address: BrightIs7331@gmail.com
Update: Sorry for no updates for awhile. I am battling moderate Primary Progressive Multiple Sclerosis. Zachary seems to be seizure free, he has a new EEG tomorrow. His Autism has gotten worse and his struggles with school work continues. Other than that he is doing well health wise.

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