Jack’s Story

Site created on September 7, 2008

My name is Jackson Rudolph McCall but my friends call me Jack. I wish I was 185 like Jackson A. Man who is a superhero. I have copy cat superpowers which are all powers. At the age of 8 1/2 I was diagnosed with advanced x-ALD and received the bone marrow of my brother Corporal Matt McCall, US Marines. I continue to recover and delight all.

While attending the April '08 graduation of my brother Matt from Marine boot camp, the day before my oldest sisters 21st birthday, I experienced a grand mal seizure just as my family was leaving. My dad was holding me in the mens room as mom ran in with some Marines she grabbed from the lobby. They all carried me out to the paramedics outside and I was given an military escort from Parris Island base to the hospital, had a CT and MRI and  I was tenatively diagnosed with ALD by that small town doctor. The diagnosis was ignored once we got home where the doctor here insisted I only had epilepsy. within a few months I worsened and experienced another grand mal seizure and began to lose my vision and have difficulty concentrating, speaking, keeping my balance, and with behavior. eventually I was diagnosed with severely advanced cerebral x- ALD and Addisons Disease (Adrenal Insufficiency and I already had Asthma from birth) and was taken to University of Minnesota for a bone marrow transplant with a Loes score of 15-17. I WAS VERY BLESSED TO HAVE ,AUNT JOAN AND AUNT ANNE AND THEIR FAMILIES TAKING CARE OF MINE. GETTING THROUGH ALL OF THIS WOULD HAVE BEEN IMPOSSIBLE WITHOUT THEIR SUPPORT WHILE WE THERE. The medical team there said it was worth a chance if I could get a sibling donor which I did. (TWO!)  I was very lucky to have the medical staff in Minnesota taking care of me. I was given aceitylcistine for3 weeks prior to starting chemo for 10 days and radiation for a day - before transplant. I received the bone marrow of my brother October 21, 2008. The doctors say my new marrow grafted within a week, unbelievable! I did have chemo effects of losing my hair, vomiting and diarhea and high blood pressure which like the grand mal seizures, caused stroke like symptoms, but in the midst of all of that I still beat moms butt at go fish! my ankles turned within a couple weeks and by christmas I had lost most of the rest of my vision. The Minnesota Patriot Guard (Suzi K) brought me a christmas tree before I lost the rest of it. my labs changed so much it was impossible to get home before January. I stayed on chemo and aceitylsiteine and about 15 meds for a few months. am still on a good number and some natural things too. In the spring I experienced the expected post transplant decline but with a gtube I started getting the proper nutritition and therapy became more productive. I am eating and drinking again and laugh all the time, and trying to speak. I can move my body again and the left side is no longer immobile. I am on the uphill swing and a true miracle. Much gratitude to U of MN for their courage to treat me and others with rare diseases. If someone you know has a boy diagnosed with ADHD or Epilepsy, urge them to get an MRI or even the simple blood test for ALD. the earlier the diagnoses the better the overall outcome. My family knows I will continue to improve and see me getting stronger every day. If you are facing anything difficult in life, be encouraged. miracles happen every day.
UPDATE my hearing is back to normal and my vision has mostly returned or seems to have. I am stable and happy and doing lots of fun things.

Newest Update

Journal entry by kerry mccall

11 years. wow. cant say how blessed we are! enjoyed a little party at chuck e cheese. Jack is doing well only small bumps in the road here and there but I know what to do when those happen. He is such a delight!
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