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: 8/30/2011
Age: 6
Diagnosis: Mitochondrial Myopathy complexes 1 & 4, Autism
Current email address: hopefay@charter.net
Update: Adam is not in the 1st grd and loving it. We have had a few set backs over the summer with behavior due to the Mito affecting his brain. He has had a hospital stay but doing great now. Lots of upcoming events he is excited for! Thanks for all the mail! 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.

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: 1/12/2012
Age: 17
Diagnosis: Epilepsy,Static Encephalopathy
Current email address: gillinn7@msn.com
Update: We are finally home after 8 days inpatient.Ariel had surgery to remove a kidney stone.Turned out there were 5 kidney stones in total they removed and several left up in the kidney itself.She has tons of appointments and has to make a lot of changes in diet and has added about 6 more pills to her daily routine.Thank you for prayers.Updates at http://www.caringbridge.org/visit/arielmarrero

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: 9/23/2011
Age: 15
Diagnosis: ALL Leukemia
Current email address: etgatus@yahoo.com
Update: Austin is doing well. He gave us a scare a few months ago,thankfully his blood counts are clear!!Austin still has post treatment issues &may have inner ear surgery in the future. Please watch and VOTE "Musical Warrior" Austin's story about his journey, love of music and friendship. Project VoiceScape: Musical Warrior (A Documentary by Angel and Austin Gatus) http://to.pbs.org/mOAw8X

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: 11/25/2011
Age: 17
Diagnosis: heart & liver disease
Current email address: gcbbunny@sympatico.ca
Update: Becky had her FINAL Cardiology appointment @ Sick Kids in Toronto today She'll now be seen by the Congenital Health team @ Toronto General & they'll follow her thru adulthood. They are concerned with low breath sounds in her right lung & want us to have her family Dr look into it & probably put her on puffers in winter months to prevent buildup of scar tissue and too low oxygen levels.

Bethany P
Date updated: 8/23/2011
Age: 17
Diagnosis: JRA, Epilepsy, Lupus
Current email address: chellie_37806@yahoo.com
Update: Bethany is not doing well right now. She has had a big increase in seizures since June. She will be going inpatient on Thurs. August 25th to have a video EEG to see what is causing the change. Please keep her in your prayers.

Braedon P
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 -

Brianna BU
Date updated: 1/21/2012
Age: 17years
Diagnosis: Canavan Leukodystrophy
Current email address: ydb739094@aol.com
Update: Her pressure sore is very tiny on her ear now. Thankfully almost healed up, she goes back to the wound care center on Feb 2nd. Health has been very good so far this winter. She had a very good Holiday season. And is loving the things she is doing in school right now.

Bryant W
Date updated: 11/13/2011
Age: 7 years old
Diagnosis: Dravet Syndrome
Current email address: amyweasel95@yahoo.com
Update: Bryant seen his neurologist in Chicago last week. We are working towards finding a solution to some new behavioral changes he has been experiencing. He is averaging 8-9 seizures per month. He loves the cards please keep them coming.

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: 10/24/2011
Age: 14
Diagnosis: spinal muscular atrophy; type 1
Current email address: caseyandcolinsmom@yahoo.com
Update: Casey has been pretty healthy. Hoping for that to continue this fall/winter! Casey is starting to get 'into' 9th grade. He's enjoying his teachers and classes and making good strides in his communication and learning! Thanks for all the cards/letters, and especially all the jokes!

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: 12/6/2011
Age: 11 1/2 years old
Diagnosis: mitochondrial disease
Current email address: alonda21@hotmail.com
Update: Colbie's disease is progressing and she is having problems with eating. She loves to get cards and mail, so please continue to send her these things. We would like to wish you all a very Merry Christmas from our family to yours.

Colin O
Date updated: 10/24/2011
Age: 10
Diagnosis: spinal muscular atrophy; type 1
Current email address: caseyandcolinsmom@yahoo.com
Update: Colin has been using his vent non-invasively more than normal. We'll be getting an airway clearance vest to see if it will help him clear his secretions easier. He's doing pretty well in 5th grade, although he has his moments when he does NOT pay attention. He likes his teachers and classmates. He enjoyed a field trip to a resevoir to hike and explore nature.

Colton M
Date updated: 7/3/2011
Age: 14
Diagnosis: Retinitis Pigmentosa
Current email address: lrobbie@bak.rr.com
Update: Still going blind- actually, he IS blind now. Loving his computer! Just bought my sons a pool and they are enjoying that! Their school starts up again mid-August so they sill have a few weeks of vacation left. Thank you.

Connor B
Date updated: 1/6/2012
Age: 7
Diagnosis: terminal brain and spine cancer
Current email address: cancersucks12@gmail.com
Update: On Dec 28, 2011 Connor had a severe adrenal crisis. He was put in the PICU for a couple days when he woke up and his vitals stabilized. Then he spent the rest of the time on the floor, total of a week. While he was inpatient, the MRI was done. Stable results!!!

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: 1/12/2012
Age: 17
Diagnosis: Pseudotumor cerebrii/ICH
Current email address: betpj@aol.com
Update: David is receiving IV iron every 4 weeks routinely, which has helped his medical problems tremendously. He continues to be as active as he is able and to enjoy life, he doesn't let his health problems define who he is and refuses to whine about what he can't do and enjoy what he can. ATTITUDE IS EVERYTHING! PLEASE keep our family in prayer for multiple unmentioned needs.

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: 11/5/2010
Age: 13
Diagnosis: cp
Current email address: bettinagary@yahoo.com
Update: elizabeth is doing well she is 64 pds and growing tall ittle over 4 6 carrol my son was in hosptial spent 7 days in was heart but god answer prayer he don't need pacemaker he is 14

Elizabeth S
Date updated: 1/19/2012
Age: 14
Diagnosis: different ones
Current email address: muffin0033@yahoo.com
Update: She doing better the 3 of us were very sick very bad colds better now she has tests coming up so far other ones are good.. ill update more later hugs to all tyty so much

Emalee K
Date updated: 2/2/2012
Age: 4
Diagnosis: stage 4 neuroblastoma
Current email address: kayleebryn@verizon.net
Update: Emalee has been feeling well! She started Preschool in Jan. and absolutely loves it!!! It is so nice to see her being a "Normal" 4 year old, going to school and making friends! She is going to Sloan Kettering tomorrow for her HAMA blood draw....if she gets a negative result she will begin the 3f8 anitbodies again in a week....if its positive we wait and retest in two more weeks & pray for neg.

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: 10/28/2011
Age: 7
Diagnosis: acute Lymphocytic Leukemia
Current email address: mireyasol@comcast.net
Update: Emilio has been having a terrible week. Admitted to hospital for fevers. Although chemo is done, he is very susceptible to infections, illness. He has been through so much. Could use some cheering up! His world is full of legos, transformers, star wars.

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: 1/1/2012
Age: 9
Diagnosis: Cystic Fibrosis
Current email address: emilyspeanut@aol.com
Update: Eric has had a rough couple of weeks. It started before Christmas when he spiked a high fever. We took him to the doctor the day before Christmas, Christmas Day, the day after and so on. They put him on antiboitics but so far the cough has not left. It is just as bad as it was before. Please send prayers our way to make this new year a good one.

Ethan S
Date updated: 7/25/2011
Age: 9
Diagnosis: dandy walker malformation
Current email address: mamastirls25@yahoo.com
Update: Ethan is doing well, he could use some happy mail as scott and i have seperated and he is having a hard time adjusting , Dalton is coping better but i think that is because he is a bit younger, the boys are having fun this summer and are looking forward to school this fall

Eva Paige S
Date updated: 7/17/2011
Age: 31/2
Diagnosis: Global Developmental Delays
Current email address: angeque143@yahoo.com
Update: Stable at the moment. Eva still struggles with gaining weight and was in the hospital for 3 days in June. She has begun talking more and remains a happy girl.

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: 12/1/2011
Age: 6
Diagnosis: Mitochondrial Encephlymyopathy/epilepsy
Current email address: nena1294@aol.com
Update: Mailing address: 273 Vetterlein Avenue, Hamilton, NJ, 08619. Julianna will be 7 soon! Praise Jesus. Jadon will be 6 too! Julianna just loves her brother's and sister. Jessica is 19 now. DJ is 12 and loves word searchs. Jared is 10 and Joey is 8 both made the Honor Roll. Jadon loves kindergarten and his pillow puppy pet. We are truly blessed by all of the mail. It keeps us going and uplifts us. TY.

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: 8/30/2011
Age: 13
Diagnosis: Double heart transplant
Current email address: karatemom05@frontier.com
Update: Kaitlyn had an excellent check up in Denver last month. Her heart looks great and the function is perfect! Thank you everyone for the cards and prayers. Hard to believe it will be 9 years with this second heart. Kaitlyn is getting ready to start 8th grade.

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: 1/1/2012
Age: 11
Diagnosis: Leukemia aml / GVHD
Current email address: tmsol87@aol.com
Update: Katia enjoyed Christmas and NewYears and loved the many cards she received. She has an important cardiology appointment coming up this month as well as her birthday (she will be 12). Her nausea has been more managed. She has been doing quite a bit of drawing lately. Thank you for your support. 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: 12/5/2011
Age: 18
Diagnosis: cp seizures
Current email address: geislermom@hotmail.com
Update: Kimmie is still having tons of seizures. But the best news of all is that Kimmie made to 18. Yes 18!!!!!!!!!!!! WOOT

Kody C
Date updated: 11/2/2011
Age: 9
Diagnosis: Hemimegalencephaly
Current email address: Kassieandkodytwins@yahoo.com
Update: Kody is still trying to get back to how he was before his last hip surgery. He is still working on balance and walking and learning how to talk clearer. He is excited about his birthday and Christmas coming!!

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: 12/20/2011
Age: 16
Diagnosis: Rett Syndrome, Asthma, Scoliosis, Seizures, Sleep Apnea
Current email address: Softbreezes60@aol.com
Update: Lauren has had a severe sinus infection, quite congested...she's getting over it but still continue extra breathing treatments. Her brother Tyler has had the flu at the same time...he's also getting better...thank you so very much for the cards and gifts sent, it has meant the world to Lauren/Tyler. God Bless and Merry Christmas to everyone and again thank you so very much!

Lisa B
Date updated: 1/12/2012
Age: 8
Diagnosis: Multiple Open Heart Surgeries/Strokes/Middle Aortic Syndrome
Current email address: betpj@aol.com
Update: Lisa's Make a Wish Trip was AMAZING and after multiple hospital stays in 2011, it was so needed! Lisa has been seeing another specialist (nephrologist) for ongoing problems. She has needed cardiac monitors and 24 hour automatic BP machines for the past two months. PLEASE keep our family in prayer for unmentioned needs!

Luke T
Date updated: 1/23/2012
Age: 4
Diagnosis: PKU, Chiari, EDS, osteoporosis, asthma
Current email address: 8teats@atlanticbb.net
Update: Luke goes to new dr tomorrow for his EDS/fractures.He has been having a lot of right leg pain that is very concerning.Headaches/vomitting has been more frequent and go for MRI in the next few weeks to check Chiari to see if any more herniation has happened. His PKU levels are well managed. He is still loving school and his 5th bday is coming up on Feb 12. Thank you for all of his happy mail! Hugs.

Maddison W
Date updated: 11/5/2011
Age: 11
Diagnosis: ewings sarcoma
Current email address: haws_2@msn.com
Update: Maddy is doing great right now. She had clear scans this August so we are very happy!

Matthew C
Date updated: 1/24/2012
Age: 7
Diagnosis: Mitochondrial disease
Current email address: tlcech@charter.net
Update: Matthew will be inpatient at CHB the second week in February for more GI motility testing . He also will have a few other follow-up appointments while we are there. He is still on 24 hr/day fube feeds and can not eat by mouth. He is allowed to have small sips of water/juice and gum and lollipops. He is not gaining much of anything on the tube feeds and its been over 3 months.

Mattie L
Date updated: 8/18/2011
Age: 11
Diagnosis: Mitochondrial Myopathy KFS
Current email address: shellyplus4@gmail.com
Update: I apologize for not updating sooner. Life has been crazy. Mattie has been having increasing difficulty with her swallow and breathing. She is getting a new power chair to help her get around. You can read her updates at http://www.caringbridge.org/visit/mattielorenzen

Maurquez Devynn T
Date updated: 1/11/2012
Age: 7
Diagnosis: A.L.L.
Current email address: furtilemom@yahoo.com
Update: Q began Maintenance 2nd cycle on 01/05/2012. He's gaining weight, getting taller and appetite has increased. He eats every 2 hours. Counts are great. Shout outs to Ms. Shoop & the 4th graders in Va., Debby M.(Pillowcase lady), sororities, and all who have sent cards, words of encouragement, prayers, original artwork from students all aver the world. Q even got mail from New Zealand.God Bless!

Maya O
Date updated: 11/12/2011
Age: 12
Diagnosis: mitochondrial disease
Current email address: mom2maya@centurytel.net
Update: Maya was just discharged from the hospital after having surgery and another week inpatient. She is struggling with a lot of pain. She is on IV antibiotics for a post op infection also. Thanks for the mail and she gets so excited that people take the time to think of her.

Melorah M
Date updated: 2/1/2012
Age: 11
Diagnosis: Dravet Syndrome
Current email address: mcmahanj@mac.com
Update: Melorah has had a few more seizures this month. She is still working on getting her core muscles strengthened. She loves all the cards... thank you!!

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.

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: 1/1/2012
Age: 13
Diagnosis: Hydranencephaly
Current email address: rtrease@nntc.net
Update: Nicole is recovering from a severe UTI and bout with pneumonia. She also had bowel issues from the antibiotics that were used, but she was able to remain home throughout her sickness. Please conitinue to pray for her and we want to Thank Everyone for their continued thoughts, prayers and random acts of kindness shown to our entire family!

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: 12/18/2011
Age: 11
Diagnosis: Mitochondrial Myopathy,Epilepsy
Current email address: wjjrfl@gmail.com
Update: Robert is doing pretty well. He currently has a bad sinus infection though. Recently diagnosed with a problem in both knees that is causing him pain. He begins a new round of PT on Mon. Roberts sister recently got married and moved away and he misses her terribly. Thank you for everything and Merry Christmas.

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: 11/13/2011
Age: 15
Diagnosis: Hodgkin's Survivor, CP, Spina Bifidai Occulta, Scoliosis, di
Current email address: cloudraven@verizon.net
Update: Sarina flew through her surgery. We won't have any answers for at least 2 months. She had a good birthday, can't belive she is 15. Thank you for all the "Happy Mail" it made her day.

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: 2/1/2012
Age: 19
Diagnosis: cp + hollervorden spatz
Current email address: sassylg73@yahoo.com
Update: Shelbys having a bad day she been having somew good days + some bad this crazy weather when we can we take her walking n her wheelchair!

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: 12/9/2011
Age: 7
Diagnosis: asd;lkjads
Current email address: as;dlkfj@as.com
Update: ;akjsd;kajsdf

Thomas G
Date updated: 12/14/2011
Age: 16
Diagnosis: bethlem myopathy
Current email address: faithtofaith@hotmail.com
Update: they still havent started thomas' pool therapy,but friday we go back to houston doctor so hopefully they will get it going.He has AFO's for his legs now,its the kind you sleep with,of course not to walk in cause he still isnt standing or walking

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: 12/1/2011
Age: 11
Diagnosis: rhabdomyosarcoma stage4
Current email address: turpin10648@gmail.com
Update: Hello, Tyler is doing well, he sees Dr. Rodriguez tomorrow and if he says that it’s okay, we will go home on Friday. Tyler’s really wanting to be home. He’s still on a lot of pain medication. We will take Tyler home and try to make things normal for him. He will get to spend Christmas with his brothers and Nathan.

Zachary T
Date updated: 8/17/2011
Age: 13
Diagnosis: Duplication 15q Syndrome
Current email address: BrightIs7331@msn.com
Update: School starts next week. Zachary's seizures seemed to be under control. His Autism chararistics are becoming more apparent. He hardly goes out into public now.

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