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Olympia Washington Family Photographer | Adrenaleukodystrophy

In July 2015 their four year old son was diagnosed with Adrenaleukodystrophy, which is a x-linked genetic disease effecting 1 of 17,000 boys between the ages of four and ten. The disease attacks the myelin sheth in the brain, causing the brain to stop communicating with the body. The child loses ability to see, hear, talk, walk and eventually leads to death. If diagnosed early, the child can attempt a bone marrow transplant if a close enough match is found. If caught too late, there’s nothing you can do. Families are sent home to love their child until they die. Titus was blessed to be diagnosed early giving him a fighting chance. They will go in every 6 months for MRI’s to check for changes in his brain which tells them how progressed the disease is.  If a scan comes back negatively, they will immediately hospitalize him and begin the transplant process. The hardest part now is NOT knowing what’s next, or when something could change.

Baby number six was born two weeks ago and Titus’s next MRI is in January. They didn’t want to take any chances of missing an opportunity to get family pictures of them all together. I was honored to be chosen by one of this family’s close friends to take their family photos during this hard trial. She planned and paid for their session then put me in contact with them to set the time. We had so much fun, and these children were so well behaved and ADORABLE.

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Olympia Washington Family Photographer

October 6, 2015

Kylee Maughan

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