Help Celyn get a life-saving Brain Surgery in NYC

Hello,

 

My name is Alanna Whittington-Barnes, and I am starting this Go Fund Me campaign on behalf of my best friend, Celyn Harding-Jones, who is in dire need of our help.

 

Celyn is a young mom seeking help to cover the costs of a life-saving brain surgery to remove a rare brain tumour, by the only neurosurgeon in the world qualified enough to remove it.

 

 

(That's the inside of Celyn's brain, the tumour is the round white mass right in the middle of the ventricle where cerebral spinal fluid flows. You can see it's getting kind of crowded in that corridor....)

 

Her tumor, which is called a colloid cyst, is in the third ventricle of her brain. For 17 years it has been steadily growing — risking hydrocephalus (fluid build-up), unconsciousness, seizures, brain fog, extreme fatigue, memory loss, loss of use of limbs, nausea, vomiting, blurry vision, changes in personality, headaches, drop attacks and sudden death. But her local neurosurgeons (though very experienced) have not been able to organize surgery over the last five years — though they have agreed it “needs to come out.” So instead, they have told her to wait for an emergency situation to operate, despite the fact that it is steadily growing and is way above the threshold typically used to determine surgery.

 

Celyn can’t “wait” for an emergency. The risks of an emergency bring on irreparable damage and possibly death. After an unrelated emergency surgery, Celyn also experienced anaphylaxis in the recovery room. And then Celyn would be operated on by neurosurgeons who have never operated on a colloid cyst. Can you weigh those risks with two loving children looking up at you?

 

 

 

(They really like bread :) )

 

Celyn consulted with Dr. Lisa Sanders , columnist for the NYT and the Netflix series Diagnosis, and she gave Celyn some sage advice: "It is a terrible decision to have to make. But remember the old poster from the 1970s: Not to decide, is to decide."

 

It is now time to take it out. For five years, Celyn has suffered from most of the symptoms above, along with being diagnosed with Fibromyalgia and Chronic Fatigue syndrome that is most likely triggered by the tumour. As a result, she has had to leave a career she loved and put her life on pause. She can’t stay awake for more than a few hours and constantly feels as if she has brain fog, let alone the constant pain.

 

Since being diagnosed, she has spent the last 17 years trying to be the best person she can be to others and has been privileged enough to work hard for the life she loves. Celyn has a husband and two vibrant children under 5 (one of whom is high needs). Celyn's children depend on her for emotional and physical support, and she can’t picture a life for them without a mother.

 

 

There are no other neurosurgeons who have the expertise needed to provide Celyn with endoscopic surgery on a colloid cyst in Canada. Moreover, her tumor is in a rare position (the expert has only seen 4 others like hers) — meaning that she absolutely needs to have Dr Souweidane and the team at Weill Cornell Brain and Spine Center remove it. They have agreed to operate, and are waiting (possibly with scalpel in hand!) for the funding to come in.

 

The costs of having brain surgery — anywhere, let alone in the US — are far beyond Celyn's family's means. She is also petitioning RAMQ (Quebec’s medical insurance agency) with a lawyer to have the Quebec government pay for the costs as it is not available in Canada. But it is very difficult to prove a NULL fact, it turns out. If the RAMQ decides to cover the costs (even retroactively), each and every penny will be returned, or donated to The Brain Tumour Foundation of Canada, if desired.

 

Thank you for reading, sharing, donating or scrolling over -- love, care, compassion, and empathy will change the world. And while life is sometimes fleeting, love is here to stay.

 

If you are able, please help ensure Celyn can live out the rest of her days with her beautiful family without the burden of a significant medical ailment hanging over her, risking that very future. Every little bit helps; we are so grateful from the bottom of our hearts.

 

Thank you,

Alanna Whittington-Barnes