I have been thinking lately about a way to help others in similar situations as ours. There are so many diseases and conditions out there that challenge parents and their ability to provide love, care and opportunity for their children. We have lived this roller coaster first hand, and continue to feel the pain and emotion when dealing with Kendall’s rare condition. The stress on a family comes in many forms including the financial burden to care for a child with special needs. Healthcare benefits can only do so much, if you have them. Last year alone, we paid over $13,000 out of pocket for Kendall’s care which included numerous hospital stays, medical supplies, therapy and so much more. The fountain of paperwork continues to flow every month and there is no end in sight. We’re lucky that Kendall’s WHS diagnosis is on the mild side (micro-deletion), otherwise the requirements for care would be exponentially higher.

So, in light of our experiences, I was thinking about some way to help others deal with the stress and pain of the hand they were dealt. The answer to part of the problem is to provide financial assistance. I don’t believe in donating to a cause bucket, not knowing what happens to my donation. Alternatively, I can make an attempt to determine where the funds go and to have some control over the outcome of the donation result. So, what better way than to create a mechanism to control this??? Well, I have decided to start up a foundation that will provide direct financial help to those individuals in dire need to help their children. I call it the “Kendall Foundation”.

All of the details are not quite figured out, but I do know that any and all collected funds will be used to pay services directly for the care of children with Wolf-Hirshhorn Syndrome (WHS). Money will not be given to familes directly, but to the organizations that are required payment for services or supplies for the child’s care. I don’t plan on this foundation becoming a large entity, but yet a simple way to provide some type of assistance to those that can’t give their children all that is possible. WHS is a more recently identified syndrome and is without cure. Since it is a genetic disorder which alters the chromosome make up of those affected, the only thing that can be done is to treat the conditions. Most of the children with WHS face many health hurdles ranging across the heart, kidneys and brain. More can be found be researching WHS or 4p-. Each child is unique, but comes with some similar symptoms. Regardless, the challenges are steep and with state budgets getting cut, programs to assist children are getting removed.

So, the way I plan to kick up this cause is to hold events that bring people together to celebrate friendship and common interests. With so little time on my plate to organize complex events, the activities will be held only a few times/year creating a small amount of funds, but large impact to those that it assists.

I hope to hold the first event in the next few months. More to come so stay posted!

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3 Responses to The Kendall Foundation

  1. Lauren says:

    Hi! Kendall is beautiful. Just a WHS mommy stopping by to say hello. It always gives me renewed hope to see the milestones and acomplishments of little ones with WHS. My daughter Norrah recently turned one and she is not yet sitting on her own. But she is almost there. I look forward to seeing her crawl, stand and walk. We will be following Kendall.

  2. Anna says:

    Hello there!
    I found your blog link from Lauren's blog. Kendall is just gorgeous. We have a 7 and 1/2 year old Ryley with WHS. Hope it is ok that we follow your blog! We also have a blog if you would like to pop over!
    Looking forward to watching Kendall grow!
    Anna 🙂

  3. Heather Joy says:

    My 2 year old son Soliz and 3 month old daughter Camila Rose both have WHS also. Kendall is beautiful. Glad to see she is doing so well.
    Heather Joy

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