Dear Friends,
Derek was born on August 1, 1997 with beautiful blue eyes and beautiful strawberry blonde hair. His older brother, Zack, loved being an older brother and as time moved along they became inseparable. When Derek began to walk, we noticed that his gait was different. We were told that he would eventually grow out of it and there was no real reason for concern. At about 13 months or so, we thought that he might have a problem. After a few MRI’s and physical testing, it was determined that Derek had cerebral palsy. Although we wanted everything to be alright, we accepted his condition and were dedicated to providing him with a very good life and create opportunities for him while he began a great deal of physical, occupational, and speech therapy.
One day, Nadia took Derek to a Tae Kwon Do school in town and the owner, Susan Winter, agreed to take Derek as a student even though he was really too young and had balance issues. To help, Zack enrolled as well, and later, Aaron would join his older brothers. Well, to make a long story short, Derek thrived at Tae Kwon Do. He would earn a Black Belt. Soon afterward he won a New Jersey State Championship competing in Special Abilities. It wasn’t long afterwards that Derek flew to Little Rock, Arkansas with Nadia and won his first World Championship. Altogether, Derek has won 5 state titles and two World Championships!! Not bad for a kid whom therapists said would have trouble walking, jumping, seeing, and doing anything athletically. Last year, he even won a gold medal in the New Jersey State Special Olympics.
As time passed we noticed that Derek’s balance was getting worse. Cerebral Palsy is a static condition. It is not supposed to get worse. After seeing a number of neurologists, who could not identify Derek’s balance problems and fatigue issues, last winter we found ourselves at the Children’s Hospital of Philadelphia. It was here that we learned about Ataxia Telangiectasia (A-T). We did some research on A-T and with the help of some friends; we got ourselves to Johns Hopkins. The largest AT clinic in the world is at Hopkins, and we learned here that Derek has this awful disease.
A-T is a rare genetic, progressive, degenerative disease that affects muscle control and the immune system while creating a predisposition to cancer. Children with A-T develop malignancies almost 1,000 times more frequently than the general population. Breathing problems and swallowing problems are a part of this disease as well. Due to increased difficulties with his stability, Derek has already developed a need to use a wheelchair. Although he currently does not need it all of the time, fatigue caused by the A-T will make him more dependent on it as this disease progresses.
Now, with the help of some wonderful, caring friends, we have formed Derek’s Dreams. Thanks to our friends who are helping us through this, money will be raised to help Derek in all of his needs as this disease progresses. Money will also be raised to help find a cure to this terrible disease.
So now, we live each day thankful for Derek. He still loves to do all of the things he always has. He loves to take care of his animals. He loves to read. However, this is becoming more of a challenge as another symptom of A-T is a loss of ocular movement. He has started to listen to more books on tape. He loves to do things with his brothers and cousins. He loves to go to school even though fatigue issues make it virtually impossible to go through an entire day.
We have dedicated ourselves to making Derek’s life as easy and as loving as possible while raising our family as best we can.
Thank you for taking the time to read Derek’s story. Thank you to all of our friends who have joined our commitment to helping Derek. Derek’s Dreams is committed to helping Derek live his life as best as possible and to help raise awareness of this disease with the hope that one day a cure will be found.
Thank you to our wonderful group who has formed Derek’s Dreams who share our devotion and commitment to helping Derek.
God Bless All of You,
Steve and Nadia DiGregorio
