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Amber Kamke's Fundraiser:

Hope Is In Daniel's Genes!

Amber's Photo
Amber's Photo
Amber's Photo
Amber Kamke

THE STORY:

My son, Daniel was diagnosed in January of 2016 with Kleefstra (pronounced "Klayf-stra") Syndrome, after 13 years of not knowing what was causing his developmental, speech & physical delays. Kleefstra Syndrome (KS) is a rare genetic condition caused by a mutation or deletion & in Daniel's case, a duplication, of the EHMT1 gene. KS patients have intellectual disabilities, speech impairments & various other neurological and physical abnormalities, including walking difficulties, heart defects, kidney/urological defects, respiratory infections & seizures. For those of you that know Daniel, you know that he is truly a miracle! When I was pregnant with him, I was told that he would be severely disabled, and had several in depth ultrasounds which showed that his heart appeared to be seriously deformed. It also showed that he was missing three toes on his left foot. I was told that I needed to deliver Daniel at a hospital with a neonatal unit, and to be prepared for lots of challenges with Daniel's health. On October 16, 2002 heaven kissed earth, and Daniel made his grand entrance into this world. He was immediately taken to the NICU, where test after test was run & doctor's heads were being scratched; Daniel's heart was completely normal... and all three of his toes were there! At that moment, gazing into my precious son's eyes, I knew that God's hand was on Daniel. I have continued to see miracle after miracle occur throughout Daniel's life. At five months of age, Daniel's growth came to a halt, and he wasn't reaching developmental milestones as he should. He did not make babbling sounds or really move around. He was sent to a geneticist and our journey into the unknown began. His geneticist looked over every inch of Daniel's small body, and he dictated to his assistant everything he observed about my precious son. He took lots of pictures of Daniel's physical features, and was especially captivated by Daniel's two-tone, long eyelashes. After the doctor's intense & very detailed physical examination of Daniel, he turned and looked me and said, "I have not seen a child with these physical characteristics before, but I can tell you that one day your son's picture will be in genetic medical books." The roller coaster ride since then has been wild, intense, and many times, scary. As a Mother, I have felt very helpless as I have watched my son go through just about every type of medical procedure imaginable & experience lots of challenging struggles. I am pretty sure that he has given gallons of blood with all of the many blood workups that he has had, but he has done so with such grace & patience. I have truly felt God's presence in tangeable, unexplainable ways during those difficult times. I have also learned more medical terminology & jargon than many of the medical professionals that work with him, as I am Daniel's voice, his advocate & responsible for teaching others about this very rare disorder called Kleefstra Syndrome. Although I never imagined that Kleefstra Syndrome was a journey that I would be taking, I sure do love my tour guide! Daniel is such a joy! Even during the difficult times, Daniel is such a blessing. He loves Jesus, his family, music, dancing, bubbles, The Wiggles, the game show Lingo, and all of his peeps! To be loved by Daniel is a privilege, in my opinion, as he will love you with every fiber of his being... and he never forgets anyone he meets. Daniel sees people through God's eyes, I believe; no judgement, no assumptions, just pure, honest, real love. He will walk up to the most lowly of people & give them a smile, a wave & even a fist bump. He has taught me so much about God's love & grace. He is also a wonderful big brother to his sister, Deborah (age 7) & brother David (age 5). He is so sweet to them, it makes my heart melt... and he teaches them about life, too. One day my daughter, Deborah said to me, "I want to have special needs like Daniel, so that I can love the way he does". Won't you help me as I lock arms with many other amazingly wonderful Kleefstra Syndrome Families & GeneSpark.org, an international non-profit foundation, in raising money to fund scientific research projects aimed at advancing a drug treatment for Kleefstra Syndrome? There is no treatment today, however, scientists do know enough to begin working towards developing a drug. Funding is the biggest hurdle and, as such, your donation and support can put a treatment within reach for my Daniel, and many other amazing children & adults with Kleefstra Syndrome. Thank you, in advance & may God bless you in exceedingly abundant ways! With Grateful Hearts, Amber, Daniel, Deborah & David

DONATE

To This Fundraiser

$500

MONEY RAISED
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  • Bethel Knapp or, "Eh El" as Daniel calls me.

     

  • Katie Clenshae

    $50

  • Katie

    $100

  • Christine McCollum

    $200

  • Michael & Deanna

    $100

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5% Raised of $10,000 Goal

Fundraise for this Campaign

The Team: $500 TOTAL RAISED SO FAR

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Donor Comments

Michael & Deanna

Michael & Deanna

DONATION: $100

To a wonderful, Dan the Man! 2 years ago

Christine McCollum

Christine McCollum

DONATION: $200

Uncle Dwaine 2 years ago

Katie

Katie

DONATION: $100

In honor of a wonderful Mom and her loving son 2 years ago

Katie Clenshae

Katie Clenshae

DONATION: $50

Oh, how I love this boy! 2 years ago

Bethel Knapp or,

Bethel Knapp or, "Eh El" as Daniel calls me.

With great love for Daniel. 2 years ago