• About Benjamin
  • Benjamin's Needs

About Benjamin Grindle

Ben was born on on February 23rd, 2010. We were so excited and happy to welcome him into our lives. Everything was perfect. He was eating like a champ and had passed all of his newborn screening tests with flying colors. We brought our little bundle of joy home and were anxious to start our lives as a family of 4. Life couldn’t have been any better.
Throughout the course of the next 6 weeks we started noticing little things. He wasn’t lifting his head yet and slept all the time. We also noticed that he seemed to prefer to keep his head to one side and his left arm was twisted a certain way.

We consulted all the books and they all said that every baby develops differently, so we thought he was just a little delayed. We figured we would wait and discuss these concerns with his doctor at his 6 week appointment. At that appointment, the doctor noticed that Ben was “floppy” and that he didn’t have any reflexes. He told us we needed to see a pediatric neurologist and sent us on our way.

That was the beginning of many sleepless nights and endless worrying. We ended up at the pediatric ICU two days later because we were concerned with his breathing. They kept him for about 4 days. During that time they ran many tests, one of which was for spinal muscular atrophy (SMA). They told us it would be 3-4 weeks before we would get the results. We spent what ended up being the longest 10 days of our lives praying and researching. We were looking for any other possible disorder this could be.

Finally, we received that phone call on April 23rd. Ben’s pediatric neurologist confirmed our worst fears. It was SMA-Type 1. Since that day we have committed ourselves to facing this disease head-on. We were told to take him home and love him and that he would probably only live a few more months. Thankfully, those doctors were wrong! Ben has had so many opportunities. He is driving a power chair, going to preschool, and just celebrated his 4th birthday! He is an amazing little boy and we are so thankful we were chosen to be his family!

SMA FACTS:
1 in 35 people carry the gene that causes SMA.
SMA is the #1 genetic killer of infants.
1 in 6000 babies are born with SMA.
For more information please visit www.team-ben.org

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Accessories For Jogging Stroller

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Attendant Seat

Ben is trached and vented and requres someone to be by his side at all times. This would make it ea


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