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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