Phillip Muth
Phillip's story begins before he was even born. At fouteen to sixteen weeks pregnancy, he did not get enough blood and oxygen to his brain. Thus, causing the outer layer of his brain to become malformed. This rare condition is known as lissencephaly (smooth brain).
Although this occured very early in the pregnancy, none of the three ultrasounds that were done were able to detect the defect. Phillip was born at 42 weeks pregnancy. He was a seemingly healthy seven pound ten ounce baby boy. He had great Apgar scores and the whole nine yards.
The first three months were smooth sailing. He slept well and fed well and developed normally. The months following were a bit different. He began to be stiff and rigid. His hands were always fisted and breast feeding became more and more tiresome. Eventually, he was completely incapable of sucking because of the spasticity.
He began physical and occupational therapy at six months of age, but he didnt receive a diagnosis until he was eight months of age.
It took great lengths to convince his pediatricians to do an MRI or any neurological testing because he was so healthy-looking and alert.
Five days before his first birthday, his baby sister was born. This has been the best toy a mother could ever give their child!
His sister Elizabeth is the light of his life and his very best friend.
She is the most patient, nurturing, loving one year-old you will ever meet. She lives to make her brother laugh. At fiteen months, Phillip began hyperbaric oxygen therapy. To date, he has had 169 treatments with phenomenal gains.
We weren't out of the woods yet, though. At eighteen months, he only weighed fourteen pounds and his energy levels were lower than ever before. Despite round-the-clock efforts, he could never quite consume enough. Swallowing was almost impossible for him. Reflux heightened in severity and dehydration was an every-day issue. A gastrostomy feeding tube was place December 6, 2005.
What should have been a two or three day hospital stay turned into two and a half months. He was severely ill. It seemed as though nutrition caused an adverse reaction to his poor, little body. His brain began to atrophy and his spirits dropped. He lost his will to fight. In the nick of time, a gastroenterologist stepped onto the scenne and decided to removbe his g-tube and place a gastric-jejunal feeding tube so that he could be fed into his small intestine and his body wouldnt have to labor to digest food. Food would no longer have to bypass his stomach, for his stomach had completely stopped moving. It gave up too.
In days, he was all smiles and playing in the hospital playroom as if nothing had ever happened. In the months following he grew like a weed and flourished. He continued to take small amounts of food orally.
He continued hyperbarics and began an intensive physical therapy program in San Antonio, Texas. Each day brought new gains for Phillip.
January 2007 attended a five-week program (conductive education, education course-nearly $10,000) in conjunction with hyperbarics in Ontario Canada known as Ability Camp. He made tremendous progress.
This brings us to the present, June of 2007. We are once again in Canada near the end of another 5 week program. We only were able ot participate in the conductive education without the hyperbarics as a result of money and reoccurent ear infections. He still continues to work hard and improve each day.
We have spent in excess of thirty thousand dollars on Phillilp's rehabilitation. Every cent has come from saving, fundraising, and God's help. I am a single mother. I have been since the day the children were born. We live in a small, 700 square foot apartment in San Antonio Texas to be near the best treatments. I am unable to work, as Phillip requires the best care and round-the-clock exercise, and only his mother can provide this, for sure. We receive no state assistance with the exception of Texas MEdicaid. (no food stamps, no TANF) Phillip receives a disability check of 700 dollars each month and the children receive six hundred dollars a month of child support. This is the total amount of the Muth family household income. We survive and thrive despite this.
We have raised fourteen thousand dollars this far. We have put nearly every cent earned to his therapy this far. I have begun to research funding opportunities and alternative treatments for his condition, cerebral palsy. In these searches, I have set my sights on the Therasuit and continuing hyperbarics.
Phillip is bright-eyed and always smiling. He works hard at everything he does. He definitely does not lack the desire to achieve. (This is my driving force.) He sees his differences with other children and often gets frustrated with his inabilty to play and communicate on his own.
His is a beautful child trapped in a body that can't keep up.
Please help Phillip show the world the child he is on the inside.
Jennifer Muth