Urgent: Donate to help with Maddy's spinal surgery

Hello! I'm Paula, sole parent of an amazing eight-year-old spitfire named Maddy.

 

Maddy needs spinal cord surgery, and we have to pay approximately $50 000 USD for neurosurgery in the US. This is a fundraiser for her surgical costs.

 

Maddy was diagnosed with Tethered Cord Syndrome on January 25, 2022.  This condition is progressive, and can result in permanent nerve damage and paralysis. 

 

Maddy's physical mobility is being affected, and she now requires a part-time wheelchair.  Surgery is needed now, before her mobility is permanently affected.



To read more...

about Maddy's story, please scroll down this page, beneath the photo.

about the complex co-occurring conditions of Chiari malformation, syringomyelia, Tethered Cord, and more:

https://bobbyjonescsf.org

about Tethered Cord, see here: 

https://www.aans.org/en/Patients/Neurosurgical-Conditions-and-Treatments/Tethered-Spinal-Cord-Syndrome

https://rarediseases.org/rare-diseases/tethered-cord-syndrome/


...

Context:

 

Maddy has experienced increasing health issues over the past three years. I began to notice rapid eye movements, changes in her gait, leg numbness, diminished fine motor control, choking on food, frequent tripping, difficulty walking long distances, and more.

 

The MRI our pediatrician ordered revealed that Maddy has Chiari malformation type 1, a congenital brain condition. Although Chiari can be asymptomatic, and is then simply monitored, Maddy had several neurological symptoms that prompted the MRI in the first place.

 

Thanks to the Bobby Jones Foundation in the US, I knew that Chiari often comes with several co-occurring conditions. Maddy had several symptoms associated with Tethered Cord Syndrome, a condition that occurs in about 1/3 of children with symptomatic Chiari. I consulted Dr. Petra Klinge at Brown University in Rhode Island. Dr. Klinge is a neurosurgeon who specializes in Tethered Cord, Chiari, and underlying connective tissue disorders.

 

Dr. Klinge diagnosed Maddy with Tethered Cord Syndrome, based on her MRI images and medical history. She also diagnosed Maddy with syringomyelia, another common co-occurring condition with Chiari and Tethered Cord. Maddy, she stated, needs surgery sooner than later to prevent permanent nerve damage and paralysis.

 

Why did we seek diagnosis in the US?

 

Bobby Jones was a famous golfer who also had syringomyelia. To address the lack of awareness about his condition, he funded the Bobby Jones Foundation to raise research funding and to educate physicians and the public about this cluster of disabling conditions. Thanks to the Bobby Jones Foundation, there is a small but mighty network of funded neurosurgeons who specialize in this cluster of conditions.

 

We don't have the equivalent of the Bobby Jones Foundation here in Canada, unfortunately. This means that we lack a strong research community of experts who specialize in these complex conditions: who research and publish on these conditions, who have expertise on underlying conditions, who present nationally and internationally on these conditions, and more.

 

As a result, Canadians with a complex cluster of conditions including Chiari, syringomyelia, Tethered Cord, and more, are forced to seek out American expert neurosurgeons who hold this specialized expertise.

 

Although we lack Canadian experts in these conditions, however, provincial healthcare plans are hesitant to help patients seeking out-of-country specialist care. We and many families like us, are faced with paying out of pocket for necessary neurosurgery. For us, this will mean approximately $60 000.

 

Hence this GoFundMe. I wish Maddy's surgery could be covered by the two insurance plans we are lucky to have in place.

 

But it is not, and she needs this surgery now.

 

This is a difficult financial time for so many of us. Even if you can share this site, and spread the word, I would be so grateful.

 

With gratitude,

Paula