Update July 27th, 2017:
We are anxiously approaching Tyler's admittance into CHOC in just a few short days.
Needless to say we are excited, yet in full panic mode as we had hoped to have until October or December to raise funds to help with the expenses. It is beyond comprehension at how much this treatment is going to cost us.
Things are urgent...We could sure use your help and contributions...Please pass this link around and help spread the word...
Thank you to everyone has contributed and who has shared Tyler's story...
Many of you have followed Tyler and his progress since birth. You may recall that Tyler was born 3 1/2 months early at week 25 of his mom's pregnancy, and given less than a 30% chance to live. He weighed just less than One full pound at .99lbs. His eyes had not even developed yet, and his skin was so thin, it was transparent and you could see his muscles.
Tyler spent the first 5 months of his life in the NICU at Valley Children's Hospital in Madera, California. With his skin so thin, his parents, John and Courtney, were not even allowed to touch him for the first several weeks. While in the NICU, Tyler suffered 4 separate code-blue flat-line episodes, a broken left femur, and contracted MRSA, in his lungs. One of the code-blue flat-line episodes, is believed to have contributed to a brain bleed. This bleed has led to what has been diagnosed as mild Cerebral Palsy.
The Cerebral Palsy has hindered the progress of Tyler being able to walk correctly, as he wears leg braces for stability, and the Cerebral Palsy has also caused issues for his digestive tract. As a result, initially, Tyler received all of his blended food and liquids, via a G-Tube (Gastrostomy tube/Stomach tube).
Slowly over the last few years, Tyler has learned how to drink and can eat blended puree foods by mouth. However, because he never took a bottle or breast, he has never properly learned how to use his mouth, tongue, teeth, and throat muscles to break down and swallow the traditional food.
After many referrals and specialty doctor visits, Tyler has been accepted to the Children's Hospital of Orange County (CHOC), feeding program, a program designed especially to help teach children how to eat...Imagine that...Not even knowing how to eat, and having to learn how to do something that we all take for granted, each and everyday...How to eat...
The CHOC program is 5 hours away and will be for approximately 25 days. Tyler's parents are going to have to take FMLA time off of work to be with Tyler, as the feeding program is an in-patient program. While on FMLA time, the family will have very little income from their employers. John will have to take this time off non-paid.
Additionally, there is the cost of hotel and meals. CHOC is in the Disneyland area of Anaheim and hotels are outrageously expensive. There is a Ronald McDonald House, but that quickly fills up with parents of the most seriously admitted children at CHOC. Luckily, the family has worked a deal with a small independent hotel where they have dropped the nightly rate to $105.00 dollars per night, a reduction of $170.00 per night.
With the almost complete loss of income from each parent, hotel, meals, travel expenses, insurance deductibles and medical out of pocket costs with CHOC, the family is looking at close to $15,000 dollars in expenses that need to be met.
It is on bended knee that Tyler's parents reach out to the community that has followed Tyler's story the last few years. They need the community's help of their family and friends to help offset the loss of income, and the out of pocket expense of insurance deductibles, hotel, meals and travel expenses.
Tyler's parents recognize that times are tough and each and every one of you have your own struggles in day to day life. If you are unable to donate to help Tyler and his parents, they understand...The only thing they ask is for you to kindly pass this GoFundMe link around to those that might be able to contribute.
Thank you and God Bless...