Date updated: 3/19/2010
Age: 13
Diagnosis: cp
Current email address: bettinagary@yahoo.com
Update: elizabeth has been sick and not feeling well I had been very sick 3 weeks ago and the whole family end up with it she is feeling somewhat better still running temps at night
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: 7/2/2010
Age: 6
Diagnosis: acute Lymphocytic Leukemia
Current email address: mireyasol@comcast.net
Update: Emilio is enjoying the summer! He went to clinic today
and his counts are stable. In 2 weeks he will receive
chemotherapy in a spinal tap, and receive IV chemo,
and monthly antibiotic. We are mourning the loss of a
cancer friend also, 11 yr old Sarah. God Bless and take
one day at a time. Emilio loves legos!!
Emma
Date updated: 6/6/2010
Age: 9 years
Diagnosis: Spinal Muscular Atrophy
Current email address: bethml@fuse.net
Update: Emma has been battling some sort of infection for the last 3 weeks. She had a hydration issue, which is resolved but her fever is back tonight.
Ethan S
Date updated: 4/15/2010
Age: 7
Diagnosis: mega cisterna magna
Current email address: mamastirls25@yahoo.com
Update: Ethan was recently started on depacote
for migraines and possible seizure
activity , he seems to be doing well on
it , School is still a struggle for him
and we are hoping that he will adjust
better next year. He loves the cards and
gifts he gets they brighten his day. He
is still struggling with eating he is
very picky so his weight is a issue but
we are working on it
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: 6/14/2010
Age: 7
Diagnosis: spina bifida, brain damage
Current email address: my3sonshines@centurytel.net
Update: Jacob is done with 2nd grade. He misses his teachers already! Jacob is having botox on his right hand/arm this summer. Otherwise, Jacob will be surgery-free this summer finally!
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: 4/1/2010
Age: 5
Diagnosis: Myopathy, Failure to Thrive
Current email address: melcody2003@yahoo.com
Update: G-tube was removed, the hole closed on its own with no surgery needed!! Jennifer got her tonsils out Tuesday 3/30/10. Went well, however, later that night she was throwing up blood which required a second surgery to stop the bleeding. She lost lots of blood but didn't require a transfusion. We are now home, but she is very tired and weak. Keeping things low key for a good week or so!
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: 5/11/2010
Age: 14
Diagnosis: unknown genetic syndrome
Current email address: ladykissendyl@comcast.net
Update: Johnny is struggling being the shortest in
high school, hopefully puberty will start
soon, the Dr think somewhere around age
16.
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: 6/4/2010
Age: 11
Diagnosis: Acute Lymphoblastic Leukemia
Current email address: B9StoME@aol.com
Update: Joshua has taken the last of the of antibiotics and seems to be doing fine. Thank God. Josh is looking forward to the last day of school. It has been a very long year for him. He writes in a journal everyday saying he wished he could have new legs and hands. Hopefully over the summer we can strengthen his legs.
Josh W
Date updated: 12/10/2009
Age: 13
Diagnosis: ROHHAD
Current email address: jwooten116@att.net
Update: Josh is using breathing pacemakers several hours each day. He is building up muscles used to take big breaths. It wears him out quickly so he must go back on his ventilator alot too. But he's doing well. Josh goes on a dream deer hunt for a TNT Outdoors tv show soon. He's excited about Christmas. And he'll be an uncle in January.
Julianna Elizabeth R
Date updated: 7/19/2010
Age: 5 years old
Diagnosis: mitochondrial disease
Current email address: nena1294@aol.com
Update: Julianna just spent a week in the hospital. We are always greatful when she gets to come home. She is still on antibiotics but her cheery self is shining through.
Thank you for all of your prayers.
Julianna's mommy millie
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: 4/2/2010
Age: 13 years
Diagnosis: Brain tunor
Current email address: erkellyc@yahoo.com
Update: Kaitlyn will be in the hospital in Madison on April 8th. She has been pretty miserable and her pain seems to be increasing daily,
Kaitlyn Marie S
Date updated: 6/8/2010
Age: 12
Diagnosis: Double heart transplant
Current email address: karatemom05@verizon.net
Update: Kaitlyn says thank you for all the mail she has been receiving! It really makes her day. =) She has been feeling better and gaining some weight the past month. Return to hospital in Aug.
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: 7/25/2010
Age: 10
Diagnosis: Bone Marrow Transplant/GVHD
Current email address: tmsol87@aol.com
Update: Katia has recently hit a bump in the road. Her left eye was bothering her more than usual and as anyone who follows her knows, Katia's eyes are very much bothered by graft vs. host disease due to rejection from her transplant. We are now finding out she has lost most vision in her left eye. There is a small cataract which will be removed asap. For more info, visit her website. Please pray. Tracy
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.
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: 6/2/2010
Age: 16
Diagnosis: cp,seizures
Current email address: mary@geislers.org
Update: Crazy few months with Kimmie's health. In and out of the hospital for meds for her bones. We did get some bad news she may need to get her hip replaced now. She is still having 100's of seizures a day. Life goes on.
Kody C
Date updated: 4/30/2010
Age: 8
Diagnosis: Hemimegalencephaly
Current email address: randiscan@yahoo.com
Update: Kody is in the hospital because he needed emergency surgery to have his appendix out. His shunt was also infected and had to be externalized until it is clear. That means he can not get out of bed until then. Please pray that Kody and our family gets through this with no complications. He will be in the hospital at the least 5 days. Thank you for your prayers.
Lauren W
Date updated: 6/26/2010
Age: 14
Diagnosis: Rett Syndrome
Current email address: Alhw60@aol.com
Update: After a nurse who was not trained to use silver nitrate on Lauren's g-tube area, Lauren was burned with second degree burns and is now infected, very painful for her. With all the rain we've had the mositure from the back yard has produced mold in Lauren's room, we are now having to find a new house to move into again....Lauren is very congested and sick from the mold. Prayers needed. Thank you!
Latosha S
Date updated: 1/9/2010
Age: 15
Diagnosis: badet biedl
Current email address: PAMELASULLENS@YAHOO.COM
Update: latoshas liver function is back to normal. She sprained her ankle. She is loving her new school which is dealing better with her disabilities.
Lawson W
Date updated: 6/7/2010
Age: 8
Diagnosis: GERD, Hypoglycemia, Asthma
Current email address: kwells2kids@yahoo.com
Update: Lawson is glad school is out for the summer. He had a stomach virus twice & then strep throat, but is finally feeling better. He also broke his arm a month ago. Thanks for the happy mail!
Lisa B
Date updated: 7/30/2010
Age: 7
Diagnosis: 3 open heart surgs, 2 strokes
Current email address: betpj@aol.com
Update: Her coumadin level is all over the place again and the heat takes a toll on her heart and lungs.She was given a scholarship for ballet classes and LOVES it, although she has to rest half way through the class, due to her health.She is allowed to have her arm brace off some, as long as she isn’t doing anything too strenuous. She has been invited to be in a special church choir, her voice is lovely.
Maddison W
Date updated: 7/4/2010
Age: 10
Diagnosis: ewings sarcoma
Current email address: haws_2@msn.com
Update: Going to Mayo this week for a check on her spine. Scans will be later this month on the 20th. Keep praying for good results!
Matthew C
Date updated: 6/1/2010
Age: 5 1/2
Diagnosis: Mitochondrial disease
Current email address: tlcech@charter.net
Update: matthew will be going back to Boston for an inpatient video EEG next week. We will be flying by Angel Flight. Matthew also has a few other appointments with GI and Metabolism while we are there.He continues to have staring spells and a very distended belly.
Mattie L
Date updated: 6/3/2010
Age: 10
Diagnosis: Klippel Feil Syndrome
Current email address: shellyplus4@gmail.com
Update: Mattie will be having surgery and some testing on June 11th. She is struggling with heat intolerance. We are still adjusting to the mitochondrial myopathy diagnosis. She is having a tough time adjusting to all the new medications. Thank you for all the happy mail!
Maya O
Date updated: 6/1/2010
Age: 11
Diagnosis: Mitochondrial disease
Current email address: mom2maya@centurytel.net
Update: Maya is doing well after a recent surgery. She's
settling in to our new place and appreciates the happy
mail she gotten. Thanks! We are beginning the yearly
struggle with the heat which has her staying indoors
much of the time.
Melorah M
Date updated: 7/1/2010
Age: 9
Diagnosis: Dravet Syndrome
Current email address: mcmahanj@mac.com
Update: Melorah was in the hospital last week and has started a medicine change this week. Things have cooled off a bit this week, which makes things easier for her. She is doing the same seizure wise. Thanks so much for the cards! She loves them!!
Michael H
Date updated: 4/16/2009
Age: 8
Diagnosis: preemie, FTT, ROP, SID
Current email address: sherry_house2001@yahoo.com
Update: Michael has been doing very well. He is ready for school to be out but he is doing great in school right now. He will be starting back playing Challenger baseball April 25th so he is excited about that. We have been having trouble with him yelling a lot but I hope that ends soon.
Michael M
Date updated: 7/22/2010
Age: 17
Diagnosis: Epilepsy,cognitive delay
Current email address: gillinn7@msn.com
Update: I can't believe Michael will be 18 this next month.He's been doing pretty good.Making all sorts of animated comics.He will be getting a neuropsyche pretty soon.
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: 6/6/2010
Age: 7 years
Diagnosis: Spinal Muscular Atrophy
Current email address: bethml@fuse.net
Update: Nicholas just got out of the hospital this past Thursday. He had pneumonia and a collapsed left lung. He is improving very well.
Nicole T
Date updated: 7/17/2010
Age: 12
Diagnosis: Hydranencephaly
Current email address: rtrease@nntc.net
Update: Nicole is having problems with allergies and has recently been put on several new medicines to help alleviate the symptoms. Please keep her in your thoughts and prayers.
She recently returned from a short visit with her Grandma at her cabin at Lake of the Ozarks, MO.
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: 7/5/2010
Age: 10
Diagnosis: Mitochondrial Disease-Epilepsy
Current email address: wjjrfl@gmail.com
Update: Robert has been having a rough time lately. His tests show he has a stomach ulcer and we are waiting on biopsy results. He goes to camp in 2 weeks and is very excited. No recent seizures. Thank you for the cards and letters.
Ryan B
Date updated: 4/1/2010
Age: 14
Diagnosis: Spinal Muscular Atrophy
Current email address: loraberhar@yahoo.com
Update: Ryan is doing well. He just turned 14 in March! He was sick prior to his birthday but has recovered!
Sarina S
Date updated: 7/29/2010
Age: 13 1/2
Diagnosis: Hodgkin's and Others
Current email address: cloudraven@verizon.net
Update: Well, they canceled Sarina's biopsy surgery yet again. Both Sarina and Breanna are now having more heart issues. Waiting on more tests.
Savannah R
Date updated: 6/1/2010
Age: 16 yrs.
Diagnosis: Cystic Fibrosis
Current email address: youthful64@yahoo.com
Update: Savannah will be 17yrs. old June 4th.
She continues to be admitted to the hospital every 3 months to keep the infections in check. Her next admit will be June 21st. She has lost more lung function and tires easily. She is still enjoying her golf lessons.
Savannah will need to have summer school.
Thanks for all the continued support.
Julie (Savannah's Mom)
Shelby T
Date updated: 7/1/2010
Age: 17
Diagnosis: ceberal palsy, hallorbvorden
Current email address: sassylg73@yahoo.com
Update: Shelby been hurting a little bit again more @ nite guess cause the heat outside we have a fan on her + air con. Well shelby will ! 18 n a few hrs planning on having her b-day @ the school well make her a bed over there so she won't have to sit up she hates to set up makes her sick. Thanks for all her cards we read them to her, she can't sit up r write back but she loves her mail!
Sierra Journey F
Date updated: 6/6/2010
Age: 9
Diagnosis: SMA type 2, kidney,lung diseas
Current email address: pixiechick1414@gmail.com
Update: Sierra has fully recovered from her trach and gtube surgery and she is doing very well! Thank youf ro all the love and prayers and cards to make her smile!
Sydney N
Date updated: 4/7/2010
Age: 8 1/2
Diagnosis: Dravet Syndrome
Current email address: hopeforsydney@hotmail.com
Update: Sydney is so excited about spring!!! She is on spring break and loving it! She will be 9 in a few weeks, no child has ever been more excited about a birthday!! She contiues to regress in all areas, but she is still happy and pain free: Praise God! She adores her mail, thanks so much! Dina
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: 6/9/2010
Age: 9
Diagnosis: 9
Current email address: 9@aol.com
Update: asd;lfka;slkdfj
Tiara Marie B
Date updated: 6/4/2010
Age: 14
Diagnosis: diabetes type 1
Current email address: cuddlebugzx2@aol.com
Update: Tiara is looking forward to summer starting soon and also looking forward to starting 9th grade in the fall as a freshman in high school. Sickness wise her blood sugars have been running so high that her A1C count is now 13.7 when she was first diagnosed and in a coma her A1C count was 18.7 so then Dr. is very concerned and has had us make a lot of adjustments and increases in her insulinTHANK-YOU
Thomas G
Date updated: 6/20/2010
Age: 14
Diagnosis: bethlem myopathy
Current email address: faithtofaith@hotmail.com
Update: thomas will be having a sleep study done in december,he still isnt walking so we will be getting a aid pretty soon to help me out and that will be a blessing
Tyler T
Date updated: 7/1/2010
Age: 9
Diagnosis: rabdo
Current email address: turpin10648@gmail.com
Update: Tyler is still doing good but faceing more surgery on his legs soon no date set yet keep praying
Zachary T
Date updated: 6/6/2010
Age: 12
Diagnosis: Duplication 15q Syndrome
Current email address: BrightIs7331@msn.com
Update: School is almost over, hard to believe Zach is going into the 7th grade, especially since he wasn't supposed to live past age 5. We won another battle for him with the school system, they finally added Other Health Impaired and Speech Impaired. So he will finally get 50 minutes of speech and language through the school. Have a fun summer everyone.
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