MEAD, Washington — A Washington state woman is sharing her baby’s heartbreaking story in hopes of getting him some help for a painful skin condition.
According to a post on a GoFundMe page, Alicia Kay’s son was born with a “life long, severe rare genetic disorer called Harlequin Ichthyosis.”
“Because Ichthyosis is a life-long condition, and because there is no cure, the goal of treatment is to alleviate symptoms and relieve pain/discomfort,” Kay wrote of her son Jamison.
Kay said doctors told her the baby would be stillborn. But she said when he came out crying she knew he “was going to fight.”
Because of complications, Kay couldn’t see her son for several days after he was born.
“I broke down when I saw him – tears of joy, fear, hope, grief, that moment will always be in my heart,” she wrote.
“My heart broke into a million pieces over and over,” she said. “I wanted to hold him and tell him it’s going to be ok. Those were really hard days, weeks, months. It was so isolating, exhausting, & scary.”
“Not knowing God’s plan but learning to trust in it, was hard,” she continued.
Kay said Jamison requires around-the-clock care. His treatment includes:
- Head-to-toe Aquafor applied every two hours
- 1 1/2 hour baths, twice a day
- 1 hour long bleach baths, twice a week
- Eye care
- Respiratory care, five times a day
- 3 hours of physical therapy per day
- Occupational therapy
- Speech therapy
“Jamison’s needs require we keep a tight schedule and manage our time well, which leaves us little wiggle room to just breath,” she wrote. “I have strong faith every day to keep on pushing asking God to carry us all.”
Kay said they are a low income family. That’s why she set up a GoFundMe page to raise money for a trip to Nashville to attend a national conference from the Foundation for Ichthyosis & Related Skin Types. So far, nearly $40,000 has been raised. That’s well above the goal of $6,000.
However, late Thursday night, she posted an update. “We will not be going to the Medical Conference. I just got the news that Jamisons heart is not strong enough to travel. Please keep him in your thoughts and prayers.”