Callum: Battles Chiari 1 & Syringomyelia

Callum Willis Lovell Giesen

Callum W.L. Giesen is only three years old and he is facing a battle against a brain malformation called Chiari 1 Malformation which has caused a beaded-elongated cyst down his entire spine called SyringomyeliaChiari 1 is a herniation of the cerebellum into the spinal column that has obstructed the cerebral spinal fluid (CSF) flow (see image below). 

The obstruction causes changes of pressure within the spine causing temporary and permanent neurological complications; and in his case, a cyst has developed within it. The cyst is has developed almost completely down his entire spine, and at one point, it is actually 90% the diameter of his spine. The beaded portion is clearly visible around the base of his neck and can be seen down his back as the white portions within his spinal column. 

Callum is an extremely intelligent and loving boy. He is always smiling or laughing and loves to joke with everybody around. He is very outgoing and makes friends with anybody that makes eye contact (which is usually anybody that notices his beautiful blonde hair). He has always been very active and loves gymnastics. At least until the neurosurgeon explained to us that in his present condition, if he has an incorrect fall, that he could be paralyzed for life...or worse.

This news came to us almost one year after his mother (Valerie) had her "stroke-like symptoms" reversed by undergoing a similar brain surgery, which Callum will be receiving shortly. (There are currently no alternatives to this procedure and Callum's doctors and our insurance have actually deemed it a medical necessity, which is even somewhat scarier.)

Over the past 15 months, Callum's mother has had five major surgeries and Callum has been treated for several medical issues. The weight of these medical issues has forced us to reach out to family and friends to ask for your help with Callum's upcoming brain surgery and everything involved with ensuring that he receives the positive outcome we all pray for.

Over the course of the lot we were given in Life, we have been almost stubborn in trying to remain self-sufficient. As no one can truly be self-sufficient, it is with humility and a humbled-heart that we ask, that any of our family and friends, that find it in their hearts and that are in the proper financial-position, to help us in our journey to find the best Neurosurgeon, facility, and Life-situation, to help Callum win this battle against Chiari 1 Malformation & Syringomyelia.

We ask that you only contribute what you can, and that you do not inconvenience yourself in the slightest. The idea behind this site is to afford individuals the opportunity to share in this extremely important point in Callum's Life through your Benevolence and Love. This is an opportunity to help--not an obligation--please contribute only what you can. This has been a very difficult year for this family and your contributions will go a long way to ensuring Callum receives the care that his family needs, and will get, him to receive. We want this page not only to be a fundraiser but also an awareness tool. We welcome any and all questions you may have!

With love and the warmest regards,

The Giesen Family
  • Cathie Perry-Smith 
    • $50 
    • 59 mos
  • Anonymous 
    • $25 
    • 83 mos
  • Sheree 
    • $80 
    • 83 mos
  • Deborah Nebenzahl 
    • $50 
    • 83 mos
  • Kristy Leananette Rember 
    • $100 
    • 84 mos
See all


Valerie Giesen 
DuPont, WA
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