Declan's Days

Declan Leen is a happy 2 year old boy living with Duchenne Muscular Dystrophy. I, Kristen Leen, his mother fought through infertility for 4 years to bring him into this world, only to get pregant 3 months before a global pandemic. I always said it was better to be pregnant during a pandemic than not pregnant at all! I thought being a "Covid Baby" or me giving birth in a mask was the hardest challenge of his early years.  Little did I know, my sweet baby was formed in me missing a tiny particle of a gene that would forever change our lives.

 

Declan looks like a normal two year old who loves Choo-Choo trains, Elmo, Coco Melon, Farm Animals and Sharks, but he has been challenged with a Gross Motor Delay since 9 months old. We have been in three sessions a week for over a year of Occupational and Physical Therapy and then we got the diagnosis confirmed by a blood test and genetic test.

This is rare a genetic disease that slowly causes muscle damage due to the lack of Dystrophin. This is a devastating disease as it typically looks like this: 

 - Gross Motor Delay in Walking until 2-3

- Stiffening of Legs around age 6-10, needs a scooter to get around

- Wheelchair bound by 10-12

- Heart and Lung Muscle Damage continues and shortens lifespan to late 20's/ early 30's. 

 

We are going to fight this progression hard for Declan with excellent medical care and a belief that a cure is around the corner with advancements of Gene Skipping and Gene Therapy Drugs!  There is no disease without a cure and God is bigger than our worries. It will take time and money to care for our sweet gift from God of this precious child. 

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