A Hanover family with ties to Salem Lutheran School is asking for the community’s help as two brother battle a rare kidney disease.
Brett (age 9) and Luke (7) were both diagnosed with cystinosis, an ailment that attacks the kidneys and has no cure. There is treatment, however, and the Walesch family – the boys’ grandparents are organizers of the online fundraiser for their two grandsons – is asking the public’s help to fund both current medications and the transplants that will eventually be needed for both kids.
Here’s the message from their online campaign:
“Seven years ago, Brett (9 1/2) and Luke (7 1/2) were diagnosed with a rare kidney disease called Cystinosis. There is no cure, but there is treatment.Transplants are in their future. This disease affects all the organs of the body, but mostly the kidneys and eyes. A transplant will not cure them, it will just give them a new kidney. They require many medications, some of which are not covered by insurance. Recently, the copay on one of their many medications went up to $600.00 a month. Their schedule is very strict. Meds are given round the clock, with doses @ 12:00am, 3:00am, 6:00am and throughout the day. They both have g-tubes, which are used to administer medications and for feeding. As you can see, their parents do not get much sleep, but still work 40 hour weeks plus overtime when available. Because of this, they do not qualify for medical assistance. The financial stress is overwhelming and has used up any savings they had and has maxed out credit cards. We are asking for any help to pay for medications and procedures not covered by insurance, and other expenses incurred from this disease. We want to thank anyone who wants to help us, and know that we are eternally grateful for your support.”
According to CystinosisResearch.org: Cystinosis is a rare, incurable metabolic disease that afflicts 500 children and young adults in the United States and only 2,000 people worldwide. The amino acid cystine accumulates and crystallizes in cells due to abnormal transport of the cystine. This build up eventually destroys all the body’s organs including the kidneys, liver, muscles, white blood cells, eyes and central nervous system. Cystinosis is an autosomal recessive genetic disease. This means that both parents are carriers of the abnormal gene that leads to this condition. The parents do not exhibit any of the symptoms of cystinosis. In such couples, the odds are that one-in-four of their children will have cystinosis.
You can help the Walesch family here (click here to visit the YouCaring.com website if you are on a mobile device and can’t view the widget below):