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Parent Diary

 

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.”

Alexis Howard - 17 1/2 (Dec. 2013)

Alexis is 17 ¬Ĺ, and was officially diagnosed with Lafora earlier this year. It all started for us on a pretty Saturday in November of 2011. Alexis and her little brother, Scotty, where playing with Legos. Scotty came outside to us and said, “Sissy is on the floor not talking to me”. Our first response; tell her to be nice. His next sentence (at the age of 4) turned our lives upside down. He said, “But stuff is coming out of her mouth and she is shaking”.

We ran inside; she was convulsing. Neither of us had ever seen someone have a seizure before and we were looking for a one time cause. A 911 call and ambulance ride later, they could not find a cause; that entire day is etched in my brain. Three weeks later, it seemed as if everything was ok, she was at school (9th grade), when I got the call that Alexis was seizing. I rushed to her, about the same time the ambulance showed up and she was still seizing! We later found out that was her first static seizure, it lasted almost 10 minutes! We left the ER and scheduled an appointment with Neurology almost 3 hours away. We did numerous tests with no answers and started our medication trial period.

Within 6 months she had many more seizures and we began to notice different kinds of them. She was slipping in school and had difficulty remembering. Fast forward to about 6 months ago; Alexis was having so many seizures she was hospitalized for weeks to do constant monitoring and more tests and doctors discussed Progressive Myoclonic Epilepsy (PME) with us. We did what just about all parents would do, we googled it. That was a wake-up call that something was VERY WRONG! I looked at the different types of PME, even browsed this Chelsea’s Hope site. We prayed it would not be that! A few weeks later I got the call that the genetics test and biopsies Alexis had taken had indeed come back with a conclusive answer- LAFORA.

I had Alexis in the room with me as I cried my eyes out. I waited for my husband to get home from work before giving him the news. He immediately began scouring the internet looking for a cure. There isn’t one!!!! Could you image for even a moment? Even the most severe forms of cancer have some kind of treatment to give a ray of hope! We were not given even that.

Alexis has been homebound from school this entire school year and most of her friends have faded away just like her memories. She has gotten over 60+ stitches to her face in just the last few months. Sometimes her legs just give out on her. While other teens are getting drivers licenses and freedom, our daughter is getting a helmet and wheelchair. There is no doubt that without a cure, our precious daughter will just be a shell of herself- that scares the hell out of us. Because of Lafora’s rarity there is very little funding for it.

As a family, we decided to share everything with Alexis. She is aware (most days), what her future holds. She has made her own Bucket List, filled out DNR forms, and is currently working on her living will. Some days she asks if she can get married or have babies, live on her own, drive, or even take a bath with no one observing her. Cruelly, the answer to all of those questions right now is no. Our son does not understand what is happening to his sissy, even family seem to want to ignore what is happening, which if I could, I think some days I would do that as well. We have had many opportunities of late to begin checking off some of her bucket list and we are currently working with Make A Wish.

To the unassuming reader that happens across this post, I simply ask you to do at least 1 of these 2 things: Donate to Chelsea’s Hope, help all of us affected by this horrible disease to find a cure. If you do not have the funds or are unsure, I ask you, no matter what your faith or beliefs are, please PRAY for all these children and families.

We have no choice but to put our child’s future in your, a strangers hands. I will post updates when time allows.

Til then,
The Howard Family
Scott, Laurie, Alexis and Scott Jr.


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