Joshua W. - Quilt Finished in 2008
Born: September 19, 1996
Illness: Late-Onset Central Hypoventilation Syndrome with Hypothalamic Dysfunction
A Thank You From Joshua's Family!
August 28, 2008
Joshua's quilt is here and he opened the box this afternoon, first thing when he got home from school. I snapped a few pictures and attached them to the email. He absolutely loves the quilt and pillow. He can't wait to use them tonight when he goes to bed. He laughed at some of the squares and especially noticed Woody on the bottom. And he appreciated the Alamo in one of the squares. He and his class learned alot about the Alamo this past school year and even went to the Alamo and toured the area. I can't believe how wonderfully it came out. The picture doesn't do it justice. Seeing it in person and realizing how much work went into each section is just absolutely breathtaking! Thank you all so very much!!!!! and God bless you!!!
Vanessa and Joshua
Joshua's Story
Written by Joshua's mom in 2008
Joshua was born a healthy 8 pounds on Thursday, September 19th, 1996 just after 10PM. I had toxemia (high blood pressure and rapid weight gain) near the end of my pregnancy with him so my labour was induced. The doctor thought he smelled a foul odor during delivery and kept Joshua in the hospital a couple of extra days to run a course of antibiotics through an IV in his little arm. Otherwise, Joshua was a normal, happy, thriving baby boy. He has a half-sister about 5 years older than him. About 10 days before she turned a year old, her mother was killed in a car accident. I married her daddy when she was about 2 and a half years old.
Joshua grew into a happy, active young boy who wanted to do anything his big sister was doing - especially T-ball. He also loved to play football with his bigger cousins - and found he could tackle them effectively even when he was about 3 years old and they were more than double his size and age. He appeared to be as healthy as any other child. The only problem we noticed was that he seemed to fail hearing screenings from the time he was about 4 years old. The doctors kept feeling like that must be due to a cold until he was in the first grade when he was finally diagnosed with a moderate hearing loss in the higher frequencies (missing mostly combination sounds like sh, th, f). He was prescribed bilateral hearing aids (one for each ear) and wore them when he went to school. He also started having trouble with basic math and reading skills in the 1st grade and was held back when we moved to a new area so he could get some extra help in school.
A few months into his second year in first grade - after moving to this new area - Joshua came down with a throat infection. We took him to the doctor and he got antibiotics for the infection. But, just as Josh was seeming like he was getting over his infection, he started getting more and more tired. He would take naps on the couch and have a very hard time waking up. I got him into the bath to try to rouse him so he could do some homework. But when he got out, he collapsed in the floor. He spiked a fever of 103. We rushed him to the Texas Med Clinic, where they found his blood oxygen level had dropped to 50 percent. It should be 95-100 percent. He had to be rushed by ambulance to a hospital for further testing and treatment.
Doctors could not find what might be causing him to have such trouble breathing. And by the next morning, he had gone into full respiratory arrest and had to be revived 5 times before doctors could get a tube placed down his throat so a ventilator could breathe for him. He spent the next two weeks on a ventilator in ICU. Test after test still did not reveal what was causing the problem. During this time, Joshua also lost the feeling and use of his left arm and leg - then he had a seizure. Doctors treated him with powerful steroids through an IV. Finally, he was strong enough that he was breathing on his own and he regained his feeling and use of his arm and leg. He was allowed to go home and followup with outpatient physical and occupational therapists. He also followed up with a neurologist, who thought Joshua had made a full recovery. But a few months later, Joshua started having problems with his breathing again.
Joshua had to be admitted again to a hospital and placed on a ventilator with a tube down his throat. This time, he spent six weeks in the hospital. But finally, a diagnosis was found - Late Onset Central Hypoventilation Syndrome with Hypothalamic Dysfunction. This disorder is so rare - only about 25 people are known to have it in all the world! It affects his growth hormone production and several automatic functions of the body - including body temperature and hydration. Because of the disorder, when Joshua is short of breath or his carbon dioxide levels get too high in his blood, he does not realize it. When most of us feel like we are suffocating and need a big breath (or several), Joshua just sits there unaware that anything is wrong. This means he needs a ventilator to breathe for him almost 24 hours a day. He also needs monitors to check for his blood oxygen and carbon dioxide levels. He has to take growth hormone shots 6 days a week. And he must take medicines to help keep him from becoming overly dehydrated and to maintain his body temperature.
A documentary about Joshua and his odd disorder was made and aired on the Discovery Channel and Discovery Health Channel. Joshua is not too keen on all the attention and certainly doesn't like to be reminded that he is anything but a normal, happy boy. But, he has enjoyed a trip to Walt Disney World through Make a Wish. And he has received cards from all over the world thanks to publicity on the internet. He loves to get mail.
Joshua also loves sports of all kinds. We live in the San Antonio area so his favorite basketball team is the San Antonio Spurs. He is also a big Dallas Cowboys football fan. He likes Harry Potter, Veggie Tales, Spiderman, Bibleman, Cars, all sorts of animals. He has received a Play Station Portable (PSP) and a Nintendo Wii system thanks to donations. He likes to bake cookies and sell them to neighbors and friends. His favorite color is blue. And he aspires to be a policeman when he grows up.
