A MESSAGE FROM Aprill
Just before Mark turned 3 years old, he started presenting with a neurological disorder. After many tests, specialist, opinions and misdiagnoses, we found out that he had a rare genetic mutation - Mark is the 3rd documented case in the world. Living with a rare disease is challenging - every day is a new day and no two days are the same. We are always looking for new ways to help him function in a world that isn't set up for rare. The most incredible part of our journey is seeing the advocate in Mark. He empowers us to be better, louder and stronger.
Since his diagnosis, we have found support through the community - friends, strangers, individuals living with a rare disease, caregivers caring for those living with a rare disease, physicians, patient advocacy groups - anywhere we can find support, we take it. NORD has been a pillar in our support. Although I'm not a marathoner or a long distance runner, I would do anything to support Mark and the group that has supported us, NORD. If I have learned anything in our journey with rare, is that we CAN do hard things. Alone we are rare, together we are strong.
If you would like to support my fundraising efforts, please use the DONATE TODAY link.
I thank you. Mark thanks you. The entire Lane Train thanks you.
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