Date updated: 8/27/2010
Age: 13
Diagnosis: Cp
Current email address: Bettinagary@yahoo.com
Update: Elizabeth doing ok she has a cold right now but
she has been doing well we need prayer my dad
is dying have not seen him in 23 years don't have
fund to fly to see him Elizabeth never meet him
he don,t have much longer trying to get adult
wish group to help me
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: 8/27/2010
Age: 6
Diagnosis: Acute Lymphocytic Leukemia
Current email address: mireyasol@comcast.net
Update: Emilio just started 1st grade! He has been very tired,
he is very neutropenic, and counts are low. Hope he
stays healthy in school to enjoy. His OCD has gotten
very bad w/ legos, and he has been very irritable. He
wants to be normal, like evryone else- Only if Mr.
Cancer would go away. Having a very hard time with
the OCD.
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: 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!
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: 8/31/2010
Age: 15
Diagnosis: unknown genetic syndrom
Current email address: ladykissendyl@comcast.net
Update: Johnny is now a sophmore , His allergies
started acting up this summer. He is still
not growing much. The endo he saw in july
says he should enter puberty soon.
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: 8/18/2010
Age: 13
Diagnosis: ROHHAD
Current email address: mom: jwooten116@att.net
Update: We closed Josh's PO BOX. Our address: 116 Willow Pointe, Cibolo, TX 78108. Josh got swine flu & double pneumonia in Jan, was hospitalized twice; is home now. Josh is excited to start junior high with his breathing pacemakers, loves new nephew, Logan. His dream deer hunt should air soon. And Mystery Diagnosis has contacted us
Julianna Elizabeth R
Date updated: 8/1/2010
Age: 5
Diagnosis: mitochondrial disease
Current email address: nena1294@aol.com
Update: Julianna has been outof the hospital two weeks. She has been suffering quick, short, seizure's.
Overall she is good. Thank you to all whom continue to write and support hugs and hope.
May God and Jesus continue to smile upon your home.
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: 9/1/2010
Age: 8
Diagnosis: Hemimegalencephaly
Current email address: randiscan@yahoo.com
Update: Kody has been in alot of pain because he needs major
surgery on his hip. He will have surgery Oct. 27. He
will be in a body cast for 6 weeks including his left
arm and feet. He has to have pins put in his ankles to
stabilize his feet. Please say some prayers for our
little man.
Lauren W
Date updated: 8/2/2010
Age: 14
Diagnosis: Rett Syndrome
Current email address: Alhw60@aol.com
Update: Lauren has been very congested lately, having to give extra breathing treatments, pain meds... she has developed a rash again, she's not been feeling well for awhile so due to this we've decided it's best to keep her homebound from school again this year unfortunately. We are trying to figure out new things that will interest her as she will be 15 this month to keep her occupied. thanks for cards
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: 8/30/2010
Age: 8
Diagnosis: GERD, Hypoglycemia, Asthma
Current email address: myjdcowboy@yahoo.com
Update: Lawson is doing well in school so far this year. He has had really bad ringing in his left ear (tinnitus) so we may be getting his 5th set of tubes put in his ears. It is so bad its keeping him awake at night. Please pray it resolves quickly. Thanks for all the happy mail. He really enjoys it.
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: 8/3/2010
Age: 10
Diagnosis: ewings sarcoma
Current email address: haws_2@msn.com
Update: Maddy's scans were ALL CLEAR! Thanks for all your continued support and prayers! 6 years in remission! YAHOO!
Matthew C
Date updated: 8/30/2010
Age: 5 3/4
Diagnosis: Mitochondrial disease
Current email address: tlcech@charter.net
Update: Matthew is scheduled to be admitted to the hospital in Boston this week. He will be having surgery(ileostomy) in hopes that his belly distention will improve. He will be there for about a week. He will be missing his first week of first grade.
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: 8/1/2010
Age: 11
Diagnosis: mitochondrial disease
Current email address: mom2maya@centurytel.net
Update: Maya was able to enjoy a trip to see her Nana and Papa
in St Louis last week. We have been dealing with
issues related to her central line, but so far are
avoiding the need to replace it and able to keep her
comfortable. Currently she has a viral infection in her
throat and is sleeping most of the day, but seems to
be improving. Thanks for the happy mail!
Melorah M
Date updated: 8/2/2010
Age: 9
Diagnosis: Dravet Syndrome
Current email address: mcmahanj@mac.com
Update: Melorah had a rough beginning of July but started on new medicine mid-July. Since that time, she has been seizure free!! Thank you for all your cards - she enjoys all the mail!
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: 9/1/2010
Age: 10
Diagnosis: Mitochondrial Myopathy
Current email address: wjjrfl@gmail.com
Update: Robert is doing well. He has OT 2x per week and PT 1x. He sees the Neuro this month and also the allergist for skin testing. Roberts sister is getting married next month and he will be the ring bearer.Thank you for the prayers and cards.
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: 9/2/2010
Age: 18
Diagnosis: ceberal palsey & hallorvorden
Current email address: sassylg73@yahoo.com
Update: shelbys doing pretty good, she a,most 72 pounds now i need to make a ap forn her to c the eye dr for a checkup and the dentist her gums r reciding bad it scares me they say their gonna have to pull her teeth but im scared i dont want her to hurt anymore!!!!!
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: 8/30/2010
Age: 14
Diagnosis: diabities type 1 uncontrolled
Current email address: cuddlebugzx2@aol.com
Update: Tiara has been doing farely well these past couple of weeks sickness wise. We spent most of the summer camping and the first half she was pretty sick with high blood sugars.She starts school on Wednesday. She is kinda scared because she is going to be a freshman in high school. I can't believe my first born is in high school now. Also I updated the kids section for ideas. They all have changed :0)
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: 8/1/2010
Age: 09
Diagnosis: rabdo
Current email address: turpin10648@gmail.com
Update: Tyler facing leg surgery on his legs soon, end of September his jaw is doing better
Zachary T
Date updated: 9/2/2010
Age: 12
Diagnosis: Duplication 15q Syndrome
Current email address: BrightIs7331@msn.com
Update: School has started and Zachary is now in the 7th grade. When we go back to Shriners in a couple of months Zachary might be put back into leg braces, because he lacks leg muscles. We will see.
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