Flashing forward to May 2017. After six years of numerous doctors from various fields, we finally got a diagnosis of Ashton. He was diagnosed with DNA Ligase IV Syndrome, commonly referred to as LIG4. At the time he was diagnosed there were only 32 cases of this syndrome recorded. Problems associated with this syndrome include a weakened immune system, facial abnormalities, growth restriction, skin conditions, hyperthyroidism, acute T-cell leukemia, Lymphoma and most likely there is more due to the rarity of the syndrome. Ashton can’t be exposed to high levels of radiation, mainly X-rays. The part of our DNA that repairs damage caused by X-rays doesn’t function properly in Ashton. He has had to undergo blood transfusions to replenish his platelet count and hemoglobin. His low blood levels are from his bone marrow functioning at 50% of normal. This is associated with his condition.
A bone marrow transplant will correct this problem. Also, it will reduce his chance of getting leukemia or lymphoma to that of an average child. Ashton will undergo chemotherapy to prepare his body for a successful transplant. Recovery will be a long road, but the outcome should be well worth it. The transplant will take place in Charlotte, North Carolina where Ashton and his family will have to move in order to be closer to the hospital for approximately six months. Through the hospital, there is a condo for families to use, as their child goes through a bone marrow transplant at no cost to the families. Ashton and his family will get to stay in the condo while they will be in Charlotte. His parents will be out of work with little or no income for months, causing their monthly bills to add up back home and they will need help. There will be a few fundraisers for the family along with a go-fund-me page that you can donate to them if you’d like to help.
Please pray for Ashton and his family as they prepare for this journey and pray for the doctors and nurses that will care for Ashton.
- Kelley Mandor
- Mark Stokes
- Brad Forseth
- Sharon Puddy
- Susan Coffey
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