BOONTON, NJ — A debilitatingly painful skin rash has plagued Alexandra McNall since she was 16 years old – when her father died of scleroderma, an autoimmune disease affecting the skin.
The 2013 Montville High School graduate said she has been to countless doctors and tried topical skin treatments, new diets, supplements, and antibiotics to try and figure out the source of her pain and find lasting relief. She’s had scores of blood draws, skin tests, and many nights of pain. And so far, nothing has helped.
But McNall will keep searching for a cause and a cure, and said she wants to “have at least tried everything possible.”
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McNall set up a GoFundMe to support herself and her family as she continues to seek the root cause of the condition, which began 13 years ago.
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At 29, the Boonton resident now has a child of her own, a nine-month-old boy named Quentin. Through her pain, she said she is fighting to get healthy for him and for her husband Gavin, who has been a pillar of support.
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“I saw (my father) sick my whole life,” she said. “Oh my gosh, it breaks my heart with my son. I don’t want him just knowing me as being sick. And I’ve been to what feels like all the doctors in the world, but I know that there’s still hope out there for me. I’m clinging on to that.”
“I’ve always wanted to be a mom,” she continued. “It’s just so hard not, you know, being able to be my best.”
A current flare-up has lasted more than six months, and McNall said the pain is often higher than a 10 out of 10. The rash starts on her face and hands, and has been spreading to her arms. At times, she feels like her body is walking through fire, or being stung by “a million bees.”
“I believe in God, and so he is the reason I am here today,” she said. “It’s hard to say it, but I would have taken my life years ago. This is not a way to live.”
Other times, her wounds ooze for hours and she has to keep moving through life with her skin dripping. She said taking showers is agonizing, and even brushing her hair causes her skin to crack.
“Sometimes my husband has to bathe me or cut my food for me,” she said, noting that Gavin has been doing much of the cooking and cleaning and trying to fix the house up. “I want to do things for him.”
McNall said she has been putting off asking for help through a fundraiser, because she knows “everybody is going through something.” But the costs of doctor visits, hospital stays, and maintaining a healthy diet and home have been adding up.
“We’re really confused and struggling and just taking it day by day,” she said.
“I so desperately want to find the root cause of this terrible disease and be the best version of myself for (Gavin and Quentin).”
As of Tuesday morning, the fundraiser has reached $4,361 of its $100,000 goal.
If enough people donate, McNall said she wants to address other issues that may be affecting her health: Getting decaying root canals removed and replaced by a holistic dentist, properly sealing the basement in their home, and purchasing a whole-house water softener and filtration system.
“I would love to give back to people one day,” she said. “I pray I can.”
To read more about McNall’s story and view the GoFundMe page, click here.
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