jessica Taylor
As writen by Jessica's mother:
Jessica was born on May 23, 1995. She was a full term baby. I had no problems through the pregnancy, not even morning sickness. I was so concerned about her health that I would not even take tylenol for a headache. I was one day overdue and the doctor decided to induce me. The delivery of Jessicas was fast. They started medication at 6:00 AM, I had no pain until 9:00 AM and she was delivered at 11:01 AM. She was delivered without any pain medication. Everything was great and we were discharged in two days.
At 3 months of age she was starting to coo, smile, hold rattles and
kick her feet. We started noticing around four months she was not
doing those things anymore nor developing new skills. We had noticed
that her head kept fallling forward quite forcefully into her fouth
and fifth month of age. I was told that her neck muscles were still
weak and that she was just a little floppy baby right now, not to
worry. Through this time Jessica has had multiple high fevers for
no reason (103 -104 degree). After countless times to the doctor,
I felt we were more of an inconvenience to the doctor. I sat many
times wondering what had happened - there was no traumatic injuries,
no dagnosis of infection - nothing. Except for the four months immunization
vaccines. I mentined this to the doctor but was assured that couldn't
be the cause. As for me and my family, were not convinced that it
was not the vaccines.
After switching doctors and starting Easter Seals, she was still developing quite slow. At age 2 she could sit by herself and started to walk with assistance at age 5. After visiting handfulls of hospitals and undergoing tests after test such as multiple MRI's, CAT Scans, EEG's, Axillary biopsies, muscle biopsy, and the worst would be spinal taps. To see them curl your baby into a ball and stick a big needle into their spine without pain medication was almost to hard to handle. Her screaming and crying was the most horrifying sounds in the world.
We were told Jessica had been having 100 + Myoclonic Seizures (head drops) a day. That's the reason she had no control over her head. She was put on several mediations which causes her to be almost into a drug coma for one year and a half. We had to wake her up to eat and socialize with her. Finally we said no more. She was take off all medicatin and had no seizures for the first two weeks, then they started again. We were forced to put her on more medication, this time one that did not interfere with learning. To this day this medication has controled her seizures.
At the age of 3, Jessica was diagnosed with a Mitochondrial disease by the Cleveland Clinic Foundatin. A Mitochondrial disease results from failure of the mitochondria (which is specialized compartments present in every cell of the body except red blood cells) Motochondria are responsible for creating more that 90% of the energy needed to sustain life and support growth. Jessica's body does not produce enough energy to transport oxygen to vital areas of the body. Through a pect scan, it revealed three areas of her brain that is lacking adequate oxygen. Jessica is now 11 years old. She is non-verbal, has a seizure disorder, vision impairment, gross and motor developmental delays, uses a wheelchair, but can walk short distances with assistance, muscle weakness, she does not feed herself, she has gastrointestinal difficulties.
Many years have past waiting and praying for a cure or treatment of this Mitochondrial disease. In the past 11 years we have had no hope of anything. Until one day, through the use of the internet, a little girl's website popped up and was quite interesting. She also had a Mitochondrial disease and was attending Ocean Hyperbaric Neurological Center in Lauderdale by the Sea, Florida. This treatment requires her to be placed into an oxygen chamber and receive 100% pure oxygen under athmospheric pressure. I also read about Therapies 4 Kids program which offers Intense Pediatric Therapy with the use of the THERASUIT, OT and speech therapy. It only makes sense that if your brain is healing and ready to learn - you must provide the learning. This is were the Therapies 4 Kids programs are so useful.
As of July 2006, Jessic has made some remarkable progress through these therapies. In her short amount of time through the Intense Pediatric Therapy she has been able to hold objects in her hand for an extended period of time, (which helps great deal with feeding), she focus on peoples faces more, gives family kisses, recognizes family members from photo's and picks the person she's asked to, smiles a lot more, attention span is improving, and able to manipulate toys she could not do before the Hyperbaric Oxygen Therapy and the Intense Pediatric Therapry, OT, and speech she had received.
I pray that we would be able to continue to provide Jessica with these great programs, so that she may continue to grow and learn. No one has been able to give use any kind of hope for our baby girl Jessica except Therapies 4 Kids and the Hyperbaric Oxygen Therapy. We must provide her with all our love and dedication to give her the life she so deserves. It's a true shame that the insurance companies will not help pay for this Hyperbaric treatments that are truely making a difference in Jessica's life.
Jessica has 2 younger brothers: Cameron, age 5, and Seth, age 1. Cameron knows everything about Jessica and tells everyone he sees about his "sissy" and her treatments. Cameron and Seth both hug and kiss their "sissy". They love her very much.
Not only does Jessica receives therapy, but I do also. I talk with several families, I hear their stories and they hear mine. We offer great hope to each other on the progress of our children. Although some families are from other countries, and don't speak english fluently, we still manage to comunicate to one another. We also discuss fundraising ideas, since this is our only source of funding for much of these services. It's wonderful to know that we are not the only ones with children with disabilities and we are all doing the same thing to get the best care possible for our children.
Having a child with disabilities takes a great
toll on your personal family lives. I feel that Jessica has put a
bond around her father and I, that could never be broken. Jessica
has made us both very strong and we could survive anything. There
were a lot of times when I questioned :"why me?" and "what
did I do wrong?". Then I was told that God gave me a very special
baby girl and he knew I would give her the best care that maybe someone
else could not do. Her father and I feel that we could not live without
her in our lives. She means everything to us and we would not trade
her for the entire world. Most communities are polite, but you do
get the stares and looks when walking into the mall or restaurants.
This used to bother me some, but I realize they don't know how lucky
we are to have Jessica. But we sure do...
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