We are a group of women from Summit Community church, we are starting this campagin to raise money for a special family who could really use some blessings!! First let me tell you why we are doing this. A few weeks ago our church united in a study called The Red Letter Challange, by Zach Zehnder. As a part of the challenge, we also took on a community project as a small group. We chose to help Jessica and her family, because frankly, none of us could imagine what it must be like to have 3 children with special needs, 3 children!!! Listen, all it takes is for a few people to come together to help a few other people who just can't help themselves, so guess what, you're it!! If you've read this far please don't stop....Below, Jessica explains in her own words what challenges she and her family face in the future. EVERYONE can help, whether you give $1 or $100, it's all going to make a difference. First, please join us in prayer for this campaign,...Father, you've given us so much and now we want to give back. Let us not forget, that any of us could be in need at any moment. Let us remember the times you've rescued us from failure, heartache and pain by sending your people to pray, love and encourage us. We lift this campaign up to you and ask your blessing on the Benson family as well as those who pray and give from the heart, may you be glorified now and forever, Amen.
Our first born son, Elijah, always seemed to be a few weeks or months behind hitting the growth milestones. I remember he was such a “chubby” baby that I used to think maybe that was why he was having trouble sitting up, standing, etc. As he aged, his symptoms started to become more and more prevalent. I was always concerned and researching his symptoms and not getting answers. We had seen numerous pediatricians/developmental pediatricians as well as neurologists, ENT’s, physical therapists, etc... They all said the same thing “Developmental delay”. When I finally got him in to see (yet) another developmental pediatrician, she had mentioned a few diseases like Fragile X syndrome and Muscular Dystrophy. I hadn’t thought about these before. We have no family history of anything like this and I “thought” I had been tested for anything serious during my pregnancy. Surely, I would know if it was something life threatening?!
When I went home from the doctor’s office, I googled “Muscular Dystrophy” and stumbled across something called “Duchenne Muscular Dystrophy” as I read the symptoms my heart sank. Then, I clicked on this video link,
https://www.youtube.com/watch?v=AF4D4TyE9NM. I immediately broke down in tears. This explained everything we’d been experiencing. These were his symptoms. I didn’t want to believe it. I remember lying in bed with him that night and stroking his hair while he slept and I wept thinking of his future and all things he’d be robbed of.
When the tests came back positive, I already knew it in my heart. He had Duchenne Muscular Dystrophy, a rare genetic disease that affects 1-3,500 live male births and an extremely rare number of female births.
Duchenne can be defined as, a mutation of the dystrophin gene that results in progressive muscle loss leading to serious medical problems. Often by the teen years those affected will lose the ability to walk, relying on a wheelchair. As the continuous loss of muscle strength progresses, this leads to more serious issues relating to the heart and lungs. Those with Duchenne are typically diagnosed in early childhood and on average live into their twenties.
Now came the worst part... Elijah is our oldest child of 4. He has a younger sister and 2 brothers. Now it was time to test our youngest two boys. Max was 2 1/2 at this time and Luke was only 6 months old. Their results came back positive for Duchenne Muscular Dystrophy as well.
I can’t think of any words that would adequately describe or convey what I or my husband felt or went through during the next year. However, the five stages of grief sound about right. Elijah is 8 years old now and has started using a power scooter at school to help him navigate campus and conserve as much of his energy as possible. We know that we have a tough time ahead of us, but are choosing to remain hopeful. We HOPE & PRAY for a cure for our boys and all those affected by all forms of Muscular Dystrophy.
I would like to thank you for taking time out of your busy day to read our story, and for your consideration in helping our family financially.
The Benson Family
Here are a few ways your contribution would help the Benson family....Medical bills and services not covered by insurance (neurologist, cardiologist, pulmonologist), equipment (wheelchairs), outside services (OT, PT and speech), securing real estate professionals to find an accomodating place to live (the Bensons need to move to a single level home with wheelchair accessibility).