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Meet the Children of
Chelsea’s Hope

 

In Memoriam

“Those we have held in our arms for a little while, we hold in our hearts forever.”

Mallorie Lindo, 16 - Boston, Massachusetts

Mallorie Lindo is a 16 year old girl living right outside of Boston Massachusetts and suffers from the rare form of epilepsy known simply as Lafora. Mallorie’s story is similar to others dealing with this atrocious disease. She was a normal, lively teenage girl whose life was drastically changed the day of her first seizure. Constant hospital visits, sporadic seizure activity, and hundreds of tests are now the norm. A once star soccer player and straight A student is slowly changing right before our eyes.

The type of Lafora that Mallorie has creates some questions amongst the Lafora experts. She possesses a rare genetic mutation that had never been mapped before and therefore created a sense of hope that perhaps there were answers hidden inside this small genome. Albeit a small sense of hope I think every parent dealing with Lafora’s can understand that any hope is worth holding onto. Unfortunately we have been told the rare defect will not help, but rather speed up the process. Another devastating blow.

When the official diagnosis came I had all the same questions every other person dealing with an affected loved one had… Why her? Why something this severe? Why not me? There are and never will be any answers. We can only enjoy one day at a time.

So we said screw it and started enjoying what we had. This summer Mal has been to Disney, Sea World, Epcot, and Universal Studios on behalf of Make-A-Wish. The local YMCA threw her a massive Sweet 16 party since she missed hers. She’s been to Maine to go canoeing, swimming, and cook spider dogs (hotdogs). We just recently made a trip to Patriots Spring Training to go cheer on her favorite football team and of course see some of the cute boys. What’s even more impressive is how everyone is coming together to show their support and love (golf tournaments, auctions, fundraisers, cards, meals, etc).

Through all the heartache and pains she continues to focus on ensuring that everyone finds JOY somewhere in life. Be it something simple like a phone call to an old friend or taking that trip you’ve been putting off for too long. Our lives are too short and if Mallorie’s disease can bring some kind of good to this world then she wins. She’ll beat it and we will all be healthier because of her.

As of today Mallorie has her ups and down. Some days are great and she is very aware of her surroundings. Other days are a struggle to say the least. We have found many cool little tricks that help her still be a strong willed teenager, but keep her safe as her body is slowly taking charge of her actions. It’s hard on everyone around her as well, but her younger brother Donovan has been amazing through it all and is always there to lend a hand. Unfortunately he is slowly losing his sister and it breaks my heart.

It’s times like these when you feel you are alone dealing with this atrocious disease, but families like Chelsea’s and those connected through Chelsea’s Hope are an amazing asset. I wish everyone dealing with their form of Lafora the best as my thoughts and well wishes are with each of you.

Jen Shattuck Cosentino – Mallorie’s mom

           

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