Local foundation aims to combat Krabbe disease

Few people know what it’s like to see a loved one struggle through Krabbe disease, a debilitating and ultimately fatal condition that impacts the nervous systems of infants and young children.

Krabbe causes a young child to develop symptoms of irritability, muscle weakness, feeding difficulties and episodes of fever as well as slow mental and physical development.

Muscles get even weaker as the disease progresses, making it nearly impossible to chew and swallow food, move and breath.

The disease is nearly impossible to treat if it isn’t caught in the initial stages of an infant’s development, and once an infant begins to exhibit symptoms of the disease, it’s too late to cure.

That’s why Steve Aldrian, co-founder of The Peace, Love & Trevor Foundation, has been leading an effort to give Krabbe disease more recognition. He has been reaching out to the California Legislature in an effort to include Krabbe in a list of diseases that expecting parents can check for as soon as a baby is born.

But Aldrian’s desire to fight the disease extends past prevention; he has also reached out to families who have children suffering from Krabbe with monetary support and advice through the foundation.

Aldrian and his late wife Nicole were motivated to start Peace, Love & Trevor after their own son, Trevor, was diagnosed with the fatal condition. They wanted to provide resources for other people who were dealing with the same kinds of struggles because they knew firsthand how difficult it is to raise a child suffering from the condition, Aldrian said.

“My wife and I felt we were blessed to have the financial ability to care for our son and we had a lot of close family and friends that were willing to assist in caring for him,” he said. “But we knew that wasn’t the case for other families and that was kind of the seed for our effort to help other families.”

He said his foundation finds families on online bulletin board websites and tight-knit internet communities and offers those families – who are often unsure of where to go or what to do –

help.

“We find these families and reach out to them and offer them assistance,” he said. “We let them know we have a son with Krabbe and point them in the direction of doctors who have experience (in treating the disease).”

Aldrian said he refers them to specialized doctors in places like Pennsylvania and North Carolina who can give their child the right kinds of medications and treatments for symptoms like irritability or pain.

But that’s certainly not the only aim of the foundation, which takes into account a family’s extenuating circumstances and difficulties. Members of the foundation once worked on a van conversion for a woman suffering from Multiple Sclerosis who had a child with Krabbe.

Because of her MS, the woman had difficulty picking up her child – whose limb function was reduced by the disease – and placing him in the van when she needed to go places with him. The foundation worked on making changes inside the van so that the woman would not have to worry about picking her child up anymore.

However, in spite of their success in helping others, there have been some dark days for the Aldrian family.

Steve’s wife, Nicole, developed breast cancer and recently passed away on May 12. Steve, who once had the support of his wife in caring for their now 6-year-old Trevor, has found it difficult to be a parent all the time. He has to bathe and feed Trevor, who is completely dependent on the help of others in his current

state.

He also has to care for Trevor’s twin brother, Tyler, who doesn’t suffer from the disease.

“I definitely notice the effects of the absence of my wife, who I miss dearly,” he said.

And in spite of his efforts to get the California State Legislature to offer Krabbe testing for all recently born children, Aldrian has come up fruitless due to both the state’s budget constraints and the rarity of the disease itself.

“Unfortunately, there are 7,000 rare diseases out there that people aren’t familiar with,” Aldrian said. “To test for this disease specifically is not something we would have ever done.”

Aldrian said that the disease’s rarity makes it a hard sell for testing but that his foundation still supports any legislation that would require such a thing. He said early testing is so important because the only time the disease can be effectively treated is when a child is asymptomatic.

Amy Zebrack, a close friend of the family and a board member for the foundation, said she has hope that the foundation will someday see testing for Krabbe and similar diseases available.

“I pray every day for it,” she said. “It’s very sad to see these kids in this condition.”

She said she’s proud of the effort that Aldrian has made to bring awareness to the disease as well as the effort he’s made to help other families. That’s something Aldrian said he’s not giving up anytime soon.

“We understand that until newborn screening exists, there’s going to be a need for our foundation,” he said. “And we will continue to assist families whose kids are born with Krabbe disease and don’t know where to

turn.”

For more information on The Peace, Love & Trevor Foundation, visit

www.peaceloveandtrevor.com.

2 Responses to "Local foundation aims to combat Krabbe disease"

  1. Melinda   July 2, 2014 at 1:21 pm

    Great work by Steve and Nicole to bring awareness of Krabbe and to also assist families with children that are afflicted with this devastating disease. God bless you Steve.

    Reply
  2. John 3:16   July 3, 2014 at 2:34 am

    Steve,
    You, Nicole and the Board of Peace, Love, and your Trevor Non-Profit Foundation have worked diligently to enact California legislation to include testing for Krabbe’s disease among the diseases that are screened for in the existing California Newborn Screening Program administered to every newborn baby born in California. Cost for Krabbe disease screening has been estimated to be minimal, $1 or less per baby. This is necessary because the only possible treatment for this painful, horrific disease must be initiated in the first few weeks of life because the symptoms of Infantile Krabbe’s Disease are otherwise undetectable, until much later when it is too late for the only existing successful treatment.

    You are commended for leadership and dedication in caring for your beautiful son, Trevor, supporting other families with children suffering from this painful disease and for advocating to add California to the growing list of States that have taken the lead in saving their babies from Krabbe’s Disease, a dreadful disease that is often curable if detected at birth. Support Universal Newborn Screening for Krabbe’s Disease!

    Reply

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