NAME: Melina Therese Allen
CURRENT AGE: 10
HOME TOWN & STATE: Altamont, TN
DIAGNOSIS DATE: January 2020
PARENTS: Jeff & Taffi Allen
SIBLINGS: Wyatt, Alora, and Quade
What it felt like when we learned our child has SLC6A1?
We received positive results for Melina and her sibling Wyatt at the same time. They were tested through a genetic study that our family was participating in after receiving the same results for our other two children during the previous year. At that point it was a combination of shell shock and ‘of course!’ combined with utter disbelief that ALL four of our kids had SLC6A1.
How did you know something was wrong? Melina was language delayed. She didn’t speak hardly at all until she was about 2 and not well enough to be understood by others until about 6. She’s still in speech therapy. What was originally thought to be inattentiveness due to ADHD broadened into obvious seizure activity accompanied by regression. She began to forget conversations, experiences, and people that she saw on a regular basis.
The hardest part of being an SLC6A1 family? The hardest part is the unknown. Will we be able to reach a cure? Will we be able to slow the regression? Stop it? Begin to make gains that we actually keep? What will life look like if we stop moving backwards? Do the letters stop? OT, PT, SLP, ASD, ABA, SPD…. Will we go from having to use apps to monitor the multiple medications and time dispersals to nothing at all? How much hope is too much? Because that should never be a question.
What are your dreams for Melina? We call this girl Princess Positivity. Melina combats every negative with a positive. She reminds everyone that there is good in everything and will help you find it if you can’t. Gently. And humbly. She stands up for every man, woman, child, beast, bird, or bug. She is simultaneously a force of nature and a gentle soul. I wouldn’t even begin to know where to dream for her. She’s already my role model.
My dream is that she grows. My dream is to have the privilege of helping her blossom into whatever she wants to be. I want to be able to MAKE that happen for her. I don’t want her dreams to be crushed by this. My dream is that this will be her past to shape a future without the struggles she has now.
Why would you like people to donate to SLC6A1 Connect? Chances are increasing that someone you know will have this gene. Chances are that someone you will come to love could never have these struggles. I love that my children are fighters; that there is no giving up in them. But I wish they didn’t have to fight. I wish they didn’t have to re-learn the things that others take for granted. My wish is that no other parent knows what this feels like. I wish for a future without this terrible disease. There are so many things in the world that you can fight for… no one should have to fight themselves.