Drake Taylor

Just a little history…

I have always believed Drake is our very special gift from God. He came to this world as a fighter and has never stopped. Drake has touched the lives of so many people. I have watch him bring a smile to a stranger’s face, bring a group of giggling teenagers to a compete stop as they bent down to talk with him and make the crumbiest of old men to pause and wonder. Drake has had a special way about him since the day he was born. God has given Drake a special mission in this life. My prayer now is the Drake’s mission is not complete here on earth, that it has only taken a turn to a new path. I pray that God will continue to allow me to be Drake’s chuffer in this amazing journey of his life.

Let me give you a brief history that has led us to the Moya Moya diagnosis. Drake has a condition called Majewski's Osteodysplastic Primordial Dwarfism Type 2 (MOPDII). It is a rare form of proportional dwarfism. At the age of 14 Drake is 39” tall and weighs 39 pounds, about the size of a 4 year old. Don’t let that fool you. As many of you know he is full of life with attitude and spunk that reaches the sky! With this MOPDII come many medical challenges. Drake has been blessed and has escaped most of the major medical conditions. In May of this year Drake had a severe headache at school. His wonderful aide at school, Mrs. Theobald, knew something was wrong and called me immediately. We took Drake to OSF Hospital in Peoria, IL and a CT of his head was done to eliminate aneurysms or bleeding. Everything was clear. We were at the 2 year mark to have the MRI/MRA scans done to view for Moya Moya, a condition that has come to be very prominent with our group of primordials. We have been doing these scans for 8 years now so we thought we would check it off the list and move on with our lives. The headache, we hoped, was just a fluke. The MRI/MRA testing was done. On page 2 of the report were the magic words… possible precondition of Moya Moya, additional testing needed for clarification. WHAT!! My heart sank. We have escape almost every complication tied to this condition. That is were the dots started connecting together. The loss of 25 points in IQ, the regression of speech, the long blank staring episodes, sleeping 12 hours a day from the usual 9 to 10 hours, all those little signs in the pass 18-20 months that you reason away.

At this point we were close to the date of the Little People of American Convention (LPA) to be held in Detroit, MI. Detroit was not really on the top ten places we wanted to visit but we had not been to a convention for 2 years so we believe it was important to attend. A new Foundation had been formed by a family to help organize our primordial families and was focusing on good medical research. They were bringing our children together and assisting primordial families with more centrally located information. I was very impress with the founder Elizabeth Hale and looking forward to meeting her in person. We also missed many of our old LPA friends and knew it was important for Drake to reconnect with his primordial friends in these teenage years.

The LPA Convention was amazing. Wonderful medical work shops, fun visits with many new and old family friends, nightly dances for the children, it was great. During this convention there was a vascular concerns workshop by Dr. Bober of DuPont Hospital for Children and Dr. Thompson from the University of Michigan Medical Center. The workshop included picture slides, symptoms (numbness of one side of the body, loss of balance, and other signs of stroke) and described the surgical corrections that are possible. None of Drake’s “signs” were mentioned. At the end of the presentation I raised my hand to ask a question. “Do you ever see a drop in IQ or regression of speech?” The doctor replied, “Yes, those are definite signs of Moya Moya.” I knew at that moment as tiers ran down my cheeks that Drake had Moya Moya. All the signs were there. Sometime it just takes a pause or changes in your routine to let things catch up with you and fall in place. Randy and I went up to Dr. Thompson and spoke with him personally after the presentation. The doctor also met Drake near the end of the conversation. From that point on I could not get back home soon enough to get the rest of the tests done. Maybe this would all go away. You always hang on to that hope.

The additional tests were done. They were far more painful as they required a large amount of die for contrast with an IV place in Drake’s arm. We have sent the studies to three different teams of doctors across the country. The diagnosis has been confirmed. A new journey has now begun…

By:
Beverly…better know as “Drake’s Mom”


Web sites that may be of interest:

The Potentials Foundation was started by Elizabeth Hale on behalf of their daughter Chloe. Elizabeth is truly God's Blessing to our families.

http://www.potentialsfoundation.org/


An information site for Moya Moya:

http://www.moyamoya.com/

Thank you for your prayers and support, Bev