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. 

HOSPITALIZED CHILDREN:
as of December 31, 2009
 

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

Adam G
Date updated: 2/24/2010
Age: 4 1/2
Diagnosis: Mitochondrial Myopathy
Current email address: hopefay@charter.net
Update: Adam has been having "blue" spells and we dont know why. Drs are messing with meds to try to fix it. Adam has also been sick with an upper respiratory cold and an ear infection, even tho he has tubes, the tube is clogged. He is using is wheelchair more due to more weakness and being over tired.

Alexander W
Date updated: 12/1/2009
Age: 12
Diagnosis: apraxia, restless leg syndrome
Current email address: ladykissendyl@comcast.net
Update: Alex is still having issues at school interacting with his peers. He is teased at school, then he reacts and becomes angry and gets into trouble.

Andrew W
Date updated: 11/6/2009
Age: 7
Diagnosis: ALL
Current email address: andrewbw3@hotmail.com
Update: Andrew has been feeling good. He turned 7 yesterday and very happy. He saw his doctors on Oct 29 and now he will not have to go back for 6 months instead of 3 months. Everything is staying the same with liver and spleen. Doing good in school.

Andruw S
Date updated: 11/3/2009
Age: 12
Diagnosis: retinablastoma
Current email address: pat3kds@yahoo.com
Update: updated picture of andruw s on his site.

Angel P
Date updated: 10/14/2009
Age: 7
Diagnosis: clear cell sarcoma, epilepsy
Current email address: stephoneyp@yahoo.com
Update: Angel has been getting home schooled but having a hard time with it. She has been staying very nervous lately. They changed her appointment so she sees the oncoligist this month. Keep up the prayers, she loves all the happy mail B-) God Bless

Aschdon B
Date updated: 11/6/2009
Age: 10
Diagnosis: Spinal Muscular Atrophy
Current email address: smamom2three@yahoo.com
Update: Aschdon is staying healthy so far. He will be having surgery on his back and arm Nov. 18. Please keep him in your prayers.

Ariel M
Date updated: 3/5/2010
Age: 15
Diagnosis: Epilepsy,StaticEncephalopathy
Current email address: gillinn7@msn.com
Update: Ariel is currently very sick with Walking Pneumonia.She will be undergoing more testing in April and then we will finally have a total picture of her seizure disorder.Thank you for all your love and support.Updates are at http://www3.caringbridge.org/wa/danielmarrero thank you again.God bless,Linn

Austin B
Date updated: 12/14/2009
Age: 10 yrs old
Diagnosis: CP
Current email address: pedsrndt@yahoo.com
Update: Austin is doing well, gaining weight and very excited about christmas coming.

Austin G
Date updated: 12/22/2009
Age: 13
Diagnosis: ALL Leukemia
Current email address: etgatus@yahoo.com
Update: Austin's having surgery to put ear tubes for his sinue issues January. He still has other odd side effects from chemotherapy. Overall he is doing well. Austin made his school basketball team! He had to work extra hard to try to keep up with the other boys, even when he still has pain in his legs & feet, he didn't give up! Please continue to keep him in your prayers. Thank you so much. God Bless!

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: 3/1/2010
Age: 15
Diagnosis: severe heart condition
Current email address: gcbbunny@sympatico.ca
Update: Becky would like to thank everyone for all their cards. Her health has improved with our move!! Possibly due to better air quality & slower pace of life. She has joined youth group @ our new church & finally has friends her own age, who accept her limitations & find ways to include her in activities even getting her to cheer for sporting events rather than play!!

Bethany P
Date updated: 2/10/2010
Age: 15
Diagnosis: jra, epilepsy, Lupus, Fibro
Current email address: chellie_37806@yahoo.com
Update: Bethany has been placed back on homebound school and had a severe blackout last week. Please pray for her!

Blake S
Date updated: 1/3/2010
Age: 17
Diagnosis: Sever Immune Deficiency,Autism
Current email address: ragamuffinsc@gmail.com
Update: Blake had a pretty good Chrisitmas...all of His ELVES out did themsleves...Pics. are on Facebook Please pray for Blake...he currently has a bad case of Bronchitis and his Sinus infection has read it's ugly head. Blake will be inpatient Jan.13-17 for antibiotic(for lungs,sinuses)and for Brittel Bone Medicines...He dreads this time.. he is up to 10 IV sticks. Thank YOU for the prayers!!!!

Brianna BU
Date updated: 2/20/2010
Age: 15
Diagnosis: Canavan Leukodystrophy
Current email address: ydb739094@aol.com
Update: She had her bladder test, the video ultrasound showed her bladder to be contracting more than it had a year ago. and the regular ultrasound showed her right kidney has not had much change, the left was still larger than the right & has a small stone in it. They are not too worried about that as of yet but will recheck it in 3 months. She has a small cold now but over all doing very well.

Bryant W
Date updated: 12/22/2009
Age: 5 yrs old
Diagnosis: Dravet Syndrome
Current email address: amyweasel95@yahoo.com
Update: Bryant started another new NON FDA approved medication aprox 3 weeks ago. He is now having some behavioral problems and is very lethargic. We are hoping that things will level out soon. He had a seizure at school last week that lasted 17 minutes. Please pray for him. Thank you for all the wonderful cards, and xmas gifts. We are very fortunate to have found such a lovely organization.

Caleb G
Date updated: 1/4/2010
Age: 10
Diagnosis: A.L.L.
Current email address: lilmsshaeshae27@yahoo.com
Update: things are not good for Caleb he was jsut recently told he is having seizures cause unknown. He's undergoing alot of testing to find out what type and whats going on.

Cameron S
Date updated: 3/3/2010
Age: 12
Diagnosis: ganglioglioma (brain tumor)
Current email address: yankee_cajun2001@yahoo.com
Update: Cameron is super! He has gained 5 lbs in 4 months and is getting taller - 5'3". Looking forward to Spring Break!

Casey O
Date updated: 2/28/2010
Age: 13
Diagnosis: spinal muscular atrophy, type1
Current email address: caseyandcolinsmom@yahoo.com
Update: Casey is getting over a respiratory infection but he only missed one day of school. We haven't gone out much or done anything exciting--cabin fever, for sure! Thanks for the ontinued prayers and all the happy mail!

Charley T
Date updated: 1/3/2010
Age: 10
Diagnosis: advanced scoliosis
Current email address: prayers4charley@yahoo.com
Update: Charley is doing well since her last surgery. She has now been released back into PE at her own request. She is still recovering but is doing well. She is loving the happy mail. Thanks to everyone that has been sending the cards and notes.

Chayce K
Date updated: 11/13/2009
Age: 7
Diagnosis: Eosinophilic Esophagitis
Current email address: shaykyle528@yahoo.com
Update: We are currently in an insurance battle to cover chayce's only source of nutrition they are denying him. Chayce is having flushing and hive issues at school. He has an entire body rash daily. More bloodwork to be done, and possible medication adjustment. Looking into possible mastocytosis.

Colbie R
Date updated: 1/17/2010
Age: 9 years old
Diagnosis: Mitochondrial Disease
Current email address: alonda21@hotmail.com
Update: Colbie came home from the hospital on Thursday night. Thank you so much for all of your thoughts and prayers that carried her through. Now on Sunday she is very sick again with vomiting and very unstable vital signs. We are trying to decide if we will treat her from home or send her to the hospital. Please send her some happy mail to make her smile if you are able to do so. Thank you!

Colin O
Date updated: 2/28/2010
Age: 8
Diagnosis: spinal muscular atrophy, type1
Current email address: caseyandcolinsmom@yahoo.com
Update: Colin is finishing a round of antibiotics for a respiratory infection, but he's stayed happy through it all! We recently started using a stander with him (barely elevated, but we'll work on it!). He is looking forward to his 9th birthday which is on Easter this year.

Colton M
Date updated: 1/12/2010
Age: 12
Diagnosis: RP
Current email address: lrobbie@bak.rr.com
Update: Colton will be 13 next month! Can you believe it? My dad (Colton's grandpa) has cancer and is not doing well... :( My son is doing great in private school and picking up some Braille. He enjoys the computer and is hoping for a lap top for his b-day (fat chance). Thanks for checking in! www.caringbridge.org/ca/coltonmeyer

Connor B
Date updated: 2/28/2010
Age: 5
Diagnosis: terminal brain & spine cancer
Current email address: cbrowning3@ec.rr.com
Update: Connor has been sick so much over the past 3 months that the hospital filed the paperwork for homebound education. We go next week to sign the paperwork. He just got over a GI bug and now has a cough and runny nose. It never ends! MRI is March 5th.

Daniel M
Date updated: 3/5/2010
Age: 18
Diagnosis: Epilepsy,Hypertension,Asthma
Current email address: gillinn7@msn.com
Update: Daniel is currently very sick with Bronchitis and Asthma.He is still being treated for his arm injury.No Grand Mals for 2 months praise God!We continue to work on seizure control.Thank you for all your love and support.Updates are at http://www3.caringbridge.org/wa/danielmarrero God bless,Linn

David B
Date updated: 3/11/2010
Age: 15
Diagnosis: Pseudotumor Cerebri/ICH
Current email address: betpj@aol.com
Update: David will receive his IV iron today and wow does he need it! We are hoping it gives him the spring in his step he deserves. His sleep has been greatly impaired this month. David's sisters (Lisa is also a H&H child) have been sick all winter with major illnesses; he has managed to stay well,Praise God.He is busy with his activities when he feels well. Thank you for caring! H&H Members are the BEST

Dillion
Date updated: 8/20/2009
Age: 7
Diagnosis: hydranencephaly
Current email address: okbabygirl20@yahoo.com
Update: Dillion has been having a rough few weeks with seizures and allergies, and could really use prayers. We do not currently have internet at home and it will likely be awhile before we do.

Dustin T
Date updated: 12/27/2009
Age: 14
Diagnosis: ADHD, ODD
Current email address: yugioh1414@yahoo.com
Update: Dustin is still in the same hospital and we do not know when he will come home. He is gaining weight but no height. He is still angry that he has lost his step dad.

Elizabeth S
Date updated: 2/26/2010
Age: 12
Diagnosis: different things
Current email address: muffin0033@yahoo.com
Update: Elizabeth has to see a dermatologist and they found out her liver is in large Her blood counts were high We have to have more blood work done. There a lot of other appts coming up for her. I'll post then also.

Elizabeth I
Date updated: 1/3/2010
Age: 12
Diagnosis: cp
Current email address: bettinagary@yahoo.com
Update: elizabeth is doing ok she will be turning 13 jan 10 she is so happy she wants a handheld vsmile she wore her old out she loves to learn and loves learning toys she will be going to all her doctors in feb will update again after appoinments

Emery B
Date updated: 12/8/2009
Age: 5
Diagnosis: lung transplant-rejecting
Current email address: threeglittergirls@yahoo.com
Update: Emery is turning 5 years old this week! He has had a bad cold but his spirits are high! www.caringbridge.org/visit/emerybock

Emilio R
Date updated: 3/4/2010
Age: 5
Diagnosis: Acute Lymphocytic Leukemia
Current email address: mireyasol@comcast.net
Update: Emilio is will have a few appointments next week. Going under anesthesia for MRI on both legs to look for osteonecrosis. Will be a very tough week. Happy mail needed... He esp. loves packages, and looks all the time for one! Will be staying at the RMH in Oak Lawn next week. One day at a time...

Emily G
Date updated: 7/14/2009
Age: 7
Diagnosis: ALL
Current email address: glenn2709@verizon.net
Update: GRADUATE - July 2009

Emma
Date updated: 12/13/2009
Age: 8 yrs
Diagnosis: SMA type 1
Current email address: bethml@fuse.net
Update: Emma is doing well. She is looking forward to Christmas and her 9th birthday. She thanks everyone for the happy mail. It makes her day!

Ethan S
Date updated: 1/3/2010
Age: 7
Diagnosis: dandy walker
Current email address: mamastirls25@yahoo.com
Update: Ethan has been having issues with dizziness and migraines. We are working with the nuero team to decide what the next step is , he could really use some happy mail, he has missed 42 days of school so far this year . He enjoys reading and seems to be doing well with his reading skills. the boys both had a good christmas thank you to our elves and anyone else that sent things for the boys

Evan M
Date updated: 10/14/2009
Age: 6
Diagnosis: thalamic brain tumor
Current email address: drcmlr@gmail.com
Update: Evan is doing and feeling great these days. He is really enjoying school, soccer and he just began therapeutic horse riding. He will have an MRI next month to check that everything is A-OK, and we hope that things continue to go well for him.

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: 11/3/2009
Age: 7
Diagnosis: Spina Bifida, brain damage, CP
Current email address: my3sonshines@centurytel.net
Update: Jacob continues to do very well following his bladder surgery in August. We are seeing some awesome progress at school. Jacob continues to amaze us everyday! Happy mail would be very appreciated! We have not received any in a very long time.

Jasmin F
Date updated: 8/6/2009
Age: 15
Diagnosis: Fibrodysplasia Ossificans Prog
Current email address: rojeanne@jasminariel.com
Update: removed from site - July 2009

Jasmin M
Date updated: 2/9/2010
Age: 8
Diagnosis: cp, microcephelaly
Current email address: mr_mcwilliams@hotmail.com
Update: I am needing to update the info for Jasmine M. the new email address is mr_mcwilliams@hotmail.com Her Father name is Scott M. and he has custody. Also the address for mailing items has changed from the po box 65 vincent, ohio 45784 to 75 Warrior Drive, Vincent oh 45784 thank you

Jennifer S
Date updated: 2/14/2010
Age: 5
Diagnosis: Myopathy, Failure to Thrive
Current email address: melcody2003@yahoo.com
Update: The GI Doctor gave the ok for the g-tube to be removed! The g-tube site is causing many problems so he agreed to remove it much earlier than anticipated. We meet with the surgeon March 4 to discuss the next step!

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: 12/1/2009
Age: 14
Diagnosis: unknown genetic syndrome
Current email address: ladykissendyl@comcast.net
Update: Johnny recovered from the flu.He is busy working hard in school to get good grades.he is still doing allergy shots every 3-4 weeks.

Joshua A
Date updated: 2/26/2010
Age: 11
Diagnosis: Acute Lymphoblastic Leukemia
Current email address: B9StoME@aol.com
Update: Joshua has been out of school all this week with an ear infection, strep throat, bacterial pink eye and respiratory syncytial virus (RSV). We are hoping he will return to school on Monday March 1st.

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: 2/13/2010
Age: 5!!
Diagnosis: Mitochondrial Disease
Current email address: nena1294@aol.com
Update: Juju has had progressive seizure activity. Redoing eeg's and mri's along with mrs. Scary but all in God's hands. Thank you all for your wonderful cards. They make every day easier. To my parent pal Carla. Thank you. To lucel thank you. To all the adults, teens, kids, teachers, schools, and so many more. You make a difference. Your stamp goes farther than you think. Thank you. Millie juju's mommy

Kady L
Date updated: 2/15/2010
Age: 12
Diagnosis: Glutaric Acidemia
Current email address: teach1970@hotmail.com
Update: Hello everyone: My father-in-law (Kady's grandpa) lost his battle to cancer last week. It is very hard for these kids, due to their illnesses, to see a loved one pass (also due to an illness). She has watched her grandpa, over the past months, lose lots of weight and go from a strong man to a weak one, and then pass. We praise God, knowing that he is with HIM now and is no longer in pain!

Kaitlyn C
Date updated: 12/15/2009
Age: 13
Diagnosis: Brain Tumor
Current email address: erkellyc@yahoo.com
Update: Kaitlyn has one again managed to baffle the team.The plan is to start with her shunt and go from there. They adjusted her setting from 1 to 1.5 in the hopes of causing some type of change, good or bad. We are also going to add a cardiologist to her team. Thanks for all the prayers and support!

Kaitlyn Marie S
Date updated: 1/9/2010
Age: 12
Diagnosis: Double Heart Transplant
Current email address: karatemom05@verizon.net
Update: Kaitlyn celebrated her 12th birthday! She is finally feeling better and has gained 2 lbs! (That is a LOT for her) =) She had a good check up this week. Special thank you to the H&H Christmas Elves! <3

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: 1/25/2010
Age: 15
Diagnosis: epilepsy and ovarian cancer
Current email address: silentlyeating@gmail.com
Update: Lots of medicine changes lately, but Karly is weathering them well. She is still cancer-free!

Katia S
Date updated: 1/1/2010
Age: 9
Diagnosis: Leukemia AML / GVHD
Current email address: tmsol87@aol.com
Update: Katia very much enjoyed Christmas! Thank you so much Elves and Volunteers!!! The year 2010 means Katia will soon turn 10 (hard to imagine) so we are truly grateful. In February, she will be 6 years post transplant. She still has chronic rejection but this is improving slowly. Her skin is having issues but overall we are weaning steroids. Happy New Year to each of you! Love, Tracy and Katia

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: 12/16/2009
Age: 16
Diagnosis: cp,seizures
Current email address: geislermom@yahoo.com
Update: Kimmie made it to sweet 16. She did have more surgery the next day. She will soon start on a new drug for her bones. She will need lots of prayers that this will work.

Kody C
Date updated: 11/19/2009
Age: 7
Diagnosis: Hemimegalencephaly
Current email address: Randiscan@yahoo.com
Update: Kody had the H1N1 virus and was very sick but thankfully got through it. He is looking forward to Christmas and his birthday. He is as always still working hard on walking and learning. He loves his cards, prayers and just good thoughts from everyone!!

Kristen K Date updated: 10/16/2008
Age: 18
Diagnosis: Congenital Central Hypoventila
Current email address: servedogmom@yahoo.com
Update: Inactive - October 2008

Kristofer H
Date updated: 10/18/2008
Age: 18
Diagnosis: Sturge-Weber Syndrome
Current email address: chcompgrad@cox.net
Update: Inactive - October 2008

Lauren W
Date updated: 3/1/2010
Age: 14
Diagnosis: Rett Syndrome
Current email address: Alhw60@aol.com
Update: Lauren is doing very well at the moment, still gets congested some days due to allergies but all in all she's doing great. She got a new RED wheelchair last week and is very excited about using it when the weather breaks to go on walks outside:-) She coninues to have homebound school four days a week. Thank you to all who have sent cards, letters and all the well wishes, it's greatly appreciated

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: 12/14/2009
Age: 7
Diagnosis: GERD, Hypoglycemia, Asthma
Current email address: myjdcowboy@yahoo.com
Update: Lawson is still enjoying going to "real" school. His other tube fell out of his ear last week. It is getting harder to get his calories in him each day. Thanks for all the happy mail and Christmas gifts!

Lisa B
Date updated: 3/11/2010
Age: 7
Diagnosis: 3 open heart surgs, 2 strokes
Current email address: betpj@aol.com
Update: Lisa has Mono now! Since Christmas she has had pneumonia, strep throat 3 times, double ear infections. Her coumadin level has been all over the place because of this. After 2 MONTHS she finally got her cast off, now she has a brace for 6 more weeks, then extensive therapy. Her birthday was VERY special THANK YOU for all of her HAPPY MAIL! Her sister, Rachel B. is quite ill, please pray for her.

Logan C
Date updated: 9/17/2009
Age: 10
Diagnosis: Leukemia
Current email address: krylog@yahoo.com
Update: Graduate - Sep 2009

Maddison W
Date updated: 3/1/2010
Age: 10
Diagnosis: ewings sarcoma
Current email address: haws_2@msn.com
Update: Maddy is doing fine, almost 6 years in remission!

Matthew C
Date updated: 3/1/2010
Age: 5
Diagnosis: Mitochondrial disease
Current email address: tlcech@charter.net
Update: Matthew will be going back to Children's Hospital Boston from March 16th-19th for appointments and to discuss the next plan.We will also be getting a second opinion at Tufts Floating Hospital in Boston on the 18th. Matthew continues to do well in school and is enjoying kindergarten. He is able to take daily naps and rest when needed.

Mattie L
Date updated: 11/12/2009
Age: 9
Diagnosis: Klippel Feil Syndrome
Current email address: avonbyshelly@gmail.com
Update: Mattie will be having surgery next week. She is having an open muscle biopsy and lumbar puncture. She also had a trip to the cardiologist this week and has to wear a cardiac monitor for the next 30 days.

Maya O
Date updated: 2/26/2010
Age: 11
Diagnosis: Mitochondrial Disease
Current email address: mom2maya@centurytel.net
Update: Maya's currently in the hospital. She is having problems keeping her pain under control and will have surgery tomorrow 2/25 to try and get to the bottom of what is going on.

Melorah M
Date updated: 3/1/2010
Age: 9
Diagnosis: Dravet Syndrome
Current email address: mcmahanj@mac.com
Update: Melorah is having more issues with low oxygen and irregular heart rates. The doctors are trying determine the cause. She may be hospitalized later this month for more testing. She LOVED all the Valentines! Thank you so much!!

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: 3/5/2010
Age: 17
Diagnosis: Epilepsy,cognitive delay
Current email address: gillinn7@msn.com
Update: Michael is currently very sick with Bronchitis.He is doing well with school and continues to love to spend his time drawing and sketching.He will be working on learning to drive this year.Seizure wise he's pretty well controlled praise God.Thank you for all your love and support.Updates are at http://www3.caringbridge.org/wa/danielmarrero God bless,Linn

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: 12/13/2009
Age: 7 yrs
Diagnosis: SMA type 1
Current email address: bethml@fuse.net
Update: Nicholas had an issue with strep recently, but is feeling better. He can't wait for Christmas. Thank you everyone for the happy mail.

Nicole T
Date updated: 2/23/2010
Age: 11
Diagnosis: Hydranencephaly, spastic quad
Current email address: rtrease@nntc.net
Update: Nicole T. is scheduled for surgery to remove her tailbone (to prevent further pressure sore breakdowns) on February 16th at 12:30. She will also have the pressure sore on her bottom surgically closed. She will be hosptalized for 4-5 days. Please keep up with us at her carepages site...http://carepages.com/carepages/nikki Thank You all for your continued thoughts and Prayers. Lynne

Rebecca B
Date updated: 3/4/2010
Age: 8
Diagnosis: Batten's Disease
Current email address: qajchook@gmail.com
Update: Becca continues to do well, all things considered. She sleeps most of the time and is very comfortable and cozy. She seems to have begun the stage with dementia, which can be scary, but she's otherwise peaceful.

Robert E
Date updated: 2/13/2010
Age: 10
Diagnosis: Mitochondrial Myopathy
Current email address: wjjrfl@gmail.com
Update: Robert is doing well. He sees the Neuro, audiologist, and the GI doctor next month. He is still having OT and PT 2 times per week, as well as weekly allergy shots. Thank you for all of the cards and letters.

Ryan B
Date updated: 1/23/2010
Age: 13
Diagnosis: Spinal Muscular Atrophy
Current email address: loraberhar@yahoo.com
Update: Ryan is doing well. He had H1N1 in the fall which he was VERY sick from. But, since that time, has been doing well!

Ryan S Date updated: 4/17/2009
Age: 17
Diagnosis: Complex Congenital Heart Defec
Current email address: tsheehan@rochester.rr.com
Update: Graduate - Apr 09

Sarah B
Date updated: 1/5/2010
Age: 18
Diagnosis: Congenital hydrocephalus
Current email address: debwilbur@yahoo.com
Update: Graduated from site - 18 years old

Sarina S
Date updated: 1/19/2010
Age: 13
Diagnosis: Hodgkin's and others
Current email address: cloudraven@verizon.net
Update: Sarina wound up in the hospital last week due to the headaches. They started her on some new medication and she is better and home. We will set up the biopsy when we see the DR in March.

Savannah R
Date updated: 12/27/2009
Age: 16 yrs.
Diagnosis: Cystic Fibrosis
Current email address: youthful64@yahoo.com
Update: Savannah has been discharged from the hospital. She will continue on home IV's for at least two more weeks. Julie (Savannah's Mom)

Shelby T
Date updated: 3/1/2010
Age: 17
Diagnosis: cp + hallorvordern spatz disea
Current email address: sassylg73@yahoo.com
Update: Shelbys been up crying hurting a lot lately @ nite we just give her pan meds t help her. She just smiles when I read her happy mail for her. She's getting big so tall.she can't wit till spring so she can lay ourside n her cot.

Sierra Journey F
Date updated: 12/8/2009
Age: 8
Diagnosis: Spinal Musculkar Atrophy
Current email address: pixiechick1429@yahoo.com
Update: Sierra had surgery yesterday and had to get a trach and a gtube .. but she made it through the surgery so the rest will all be easy .. that was the hurdle we had to coss they were not giving us good chances of her making it through the surgery .. but she surprises us everytime!

Skylar S
Skylar passed away the end of April.  Keep her mom, Tracy, in your prayers.

Steven S
Date updated: 10/24/2008
Age: 17
Diagnosis: aids
Current email address: sockinabox@aol.com
Update: Inactive - October 2008

Sydney N
Date updated: 11/4/2009
Age: 8 1/2
Diagnosis: Dravet Syndrome
Current email address: hopeforsydney@hotmail.com
Update: Sydney has had a very rough summer/fall. Her seizures have increased in both frequency and intensity. She is in the hospital today. She will have a double surgery on the 12 of Nov and another one on the 16th of Dec. She loves the cards and gifts!! You guys reall out do yourselves! We are blessed to be at part of your organization! Thanks so much, Dina - Sydney and Sadie "Rooney" too!

Tabitha M
Date updated: 2/9/2010
Age: 8
Diagnosis: CP, Hydrocephalus
Current email address: mr_mcwilliams@hotmail.com
Update: Tabitha M new information new email address mr_mcwilliams@hotmail.com new mailing address 75 Warrior Drive Vincent, Ohio 45784 Scott M. Father current custody

Test T
Date updated: 10/17/2008
Age: 1
Diagnosis: 1
Current email address: test@as.com
Update: asd as;dlfa;skjdf

Tiara Marie B
Date updated: 3/1/2010
Age: 14
Diagnosis: uncontroled diabetes type1
Current email address: cuddlebugzx2@aol.com
Update: Tiara has been having a hard time this year in school and all. She has been running very high blood sugars which has made it very hard to stay in school and even be happy. We put her in youth group and she is liking that and started Kartate as well which has been a god sent. We also started counsoling and praying that helps. She has been very sick lately because of her high blood sugars.

Thomas G
Date updated: 2/17/2010
Age: 14
Diagnosis: bethlem myopathy
Current email address: faithtofaith@hotmail.com
Update: thomas had a ingrown toenail,doctor removed his toenail,he had 4 shots in his toe,he is such a brave young man,he didnt fuss,cry,whimper at all and he still isnt walking at all.

Tyler T
Date updated: 3/1/2010
Age: 9
Diagnosis: rabdo stage 4
Current email address: turpin10648@bellsouth.net
Update: Tyler is still doing great,he will be having more jaw surgery jun or july please keep him in your prayers

Vicktor T
Date updated: 1/5/2010
Age: 18
Diagnosis: Aspergers
Current email address: brightIs7331@msn.com
Update: Graduated from site - 18 years old

Zachary T
Date updated: 3/1/2010
Age: 12
Diagnosis: Duplication 15q Syndrome
Current email address: BrightIs7331@msn.com
Update: Zachary had a bad experience on the school bus last week, he had a bully punch him real hard on the back of the head. He ended up having to stay home from school the next day due to having several partial seizures in a row and a bad headache. We were very scarded but he seems to be better now. My surgery has seemed to be helpfull, hopefully the pain will start to decrease soon.

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