Life Beyond a Diagnosis for Nate

My name is Kaite and I am raising funds for my friend Heather on behalf of her son Nate.

Heather is the friend who literally drove her newly renovated 1970's Winnebago from CA to PA to make me a wedding dress in 3 DAYS because my engagement gave her less than one months notice!

Now, Heather is the one with a tight time frame--her newly adopted son Nate has been given a serious,  life-altering diagnosis and they need to move closer to family so she can give Nate everything he needs while also being supported as a new, single mother. I asked for details and this is what she shared:

"On June 25, 2018, every loss and heartbreak I’ve ever experienced was redeemed when I was available to become Nate’s foster mom. I stood on my porch and watched the social worker walk toward me with this tiny, traumatized 10 month old baby boy in a soaking wet diaper and a onesie that didn’t fit. He was under 16 lb., and couldn’t sit up on his own or even hold his head up. He was pale and his body was stiff, but when she handed him to me and our eyes met, his face lit up. I told him that day that I was his person; that every day I was given with him, I would make sure he was safe and had all he needed. Nothing has been the same for either of us since.

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The next two years were filled with appointments with doctors, therapists, and social workers. Tests, hospital stays, visitations, and court appearances, all leading to multiple diagnoses and endless uncertainty. But despite every setback or prognosis, Nate thrived. He hit milestone after milestone at his own pace, and crushed so many “he’ll never...” predictions that they finally stopped making them. And I stopped counting how often even doctors used the word, “miracle” to describe his progress.

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In early 2019, Nate was diagnosed with Cerebral Palsy, but the diagnosis never quite seemed to fit. This summer, just a week after his adoption was finalized (another miracle!), I was able to take him for a second opinion with a neurologist who strongly recommended genetic testing. Those results determined that he has a very rare genetic disorder called Charcot-Marie-Tooth Disease, or CMT1A. It is a degenerative nerve disease that damages the coating of the peripheral nerves, causing weakness, pain, deformity, and loss of muscle tone in the extremities (feet and hands), and can eventually affect other functions like breathing, swallowing, vision, and hearing. Only 1 in 2,500 people worldwide have it, so there isn't a lot of research that would offer a cure or even a particular treatment. And as rare as it is, most people are diagnosed much later in life, so pediatric specialists are even more scarce.

Because I adopted Nate from foster care, the state provides medical coverage for most of his healthcare needs until he turns 18. However, since there is not a specific medical treatment for CMT, many of the things that will help him are unlikely to be included. Expenses like travel to specialists and adaptive/supportive gear are barely covered, if at all. All of his doctors agree with the research I’ve managed to do so far; that early therapeutic intervention and proactive, holistic health is crucial for the challenges he is facing. My mission in life is to find a way to keep that promise I made to him to provide everything he needs to not only overcome his challenges and reach his potential, but to live a life of purpose and joy.

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We need to be in a place where both of us have support for physical, emotional, mental, and spiritual health. Nate needs the security and stability of a permanent home and strong family and community connections throughout his childhood and adulthood. Although we have wonderful friends, neighbors, and healthcare providers where we live now, the isolation during COVID and separation from most of them has been really hard on both of us. We’ve taken a few trips to visit family several hours away, and the difference it made for us each time caused me to be prayerfully considering a permanent move there.


Just days before we got the CMT diagnosis, an opportunity opened up that would provide the best possible environment for Nate to thrive; the property next door to our family is for sale! There is land for us to plant a little farm, for Nate to play and work in the sunshine and dirt, and a beautiful house that will give us enough room to create a therapeutic space for him. We will be shouting distance from aunts, uncles, cousins, and grandparents who love us and are invested in our lives already. They even have a pool, which happens to be the very best exercise recommended for Nate’s body! There are some renovations and modifications that will need to be made on the house for it to be safe and accommodating to his physical needs, but it is an answer to prayer in every imaginable way.

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Needing to move as soon as possible, and because of my financial circumstances; being single, self-employed, and not having intended or prepared for even the possibility of ever buying a house, purchasing it the conventional way is pretty much out of reach. So, I am looking for yet another miracle… my goal is to raise $45,000 for a down payment on the house, renovations, and moving expenses. This should at least get us on our way, while I continue looking toward phase 2; finding creative financing for the rest of the asking price of $318,000. Ideally, I would like us to begin the move in the next 4 to 6 weeks.

Nate has come so far from how his life started out, he deserves all of the resources he needs to match his incredible strength and tenacity. So many people have played a role in Nate's story already, enabling me to become a foster parent, and loving and supporting us both throughout the past two and a half years. Facing a future with CMT feels impossible on our own, so I covet prayer and appreciate the help of our village, near and far."



Thank you for joining me, for giving what you can, and sharing the need with others who, together, will help to provide all of the support that Nate & Heather deserve!


Donations

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  • Christina Paschke 
    • $250 
    • 1 d
  • Angela Prince 
    • $100 
    • 2 d
  • Laura Standeven 
    • $300 
    • 2 d
  • Anonymous 
    • $250 
    • 7 d
  • Anonymous 
    • $200 
    • 7 d
See all

Organizer and beneficiary

Kaite Klopp 
Organizer
Chambersburg, PA
Heather Anderson 
Beneficiary
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