Mason's Dream To Walk

Mason is a bright, young 2 year old who has just been accepted for a Selective Dorsal Rhizotomy. This is a surgery that is available at the St Louis Children’s Hospital and performed by Dr. Park.  Mason and his family are from Maine. They will have to travel to St. Louis for a 10 day stay for his initial surgery and post OP.  It will also require them to return again for a follow up at 4 months post-surgery. Depending on how well he recovers, a 3rd trip back could be required to be seen again by the doctors.

Selective dorsal rhizotomy or SDR involves sectioning (cutting) of some of the sensory nerve fibers that come from the muscles and enter the spinal cord. It's a surgery on the spinal cord where motor and sensory nerves are separated. At which point the sensory nerves that test high for spasticity are cut. Presently, SDR is the only surgical procedure that can provide permanent reduction of spasticity in CP. SDR results in improvements in sitting, standing, walking, and balance control in walking.  Having this surgery earlier in life allows for better outcomes as well as less risk for complicated orthopedic surgeries in the future.

As a family of 6, this will be a huge expense for them. So I wanted to help by setting this up to aid the family financially, with the expenses that will not be covered. Mason will need to fly with both of his parents for a 10 day stay. They will need to take time off of work, airfare, hotel and food for their stay. We hope that the initial surgery will be covered under his health care, however there will be co-insurances and co pays that will need to be paid. His family has always been able to provide every therapy, doctor or specialist, and equipment, without asking for help. However, this has been a very quick process. Within 5 weeks of applying, we now know he is accepted and surgery could be before the first of the New Year! Leaving them not a lot of time to plan ahead for this. Any help will be greatly appreciated.

So here is Masons Story.

Mason is a very bright and vibrant little boy who didn’t have the easiest beginning of life. Ashley and Joshua (Mason’s mom and dad) struggled to get pregnant so they took to IVF as a final option. They became very excited after Ashley’s third cycle when they saw those two lines pop up on the test. It didn’t start as an easy pregnancy for Ashley. At 19 weeks Ashley began to have contractions, She was given medicine which would help stopped them. At 28 weeks Ashley ended up in labor and delivery again with contractions and sure enough, she had started dilating. She was admitted and started a few different medications. After a 5 day stay she was discharged and told to take it easy. 3 days later Ashley knew something was wrong so she went back to the hospital. They told her that she was still only 3 cm dilated and to go home. 4 hours later she knew something was seriously wrong. So she called and went to see her doctor. Ashley was 7/8 cm dilated and told to go to the hospital NOW. At 10 pm Ashley just 29 weeks 3day pregnant was brought to the OR for delivery. Shortly after Joshua and Ashley had two beautiful baby boys who were quickly rushed to the NICU. Mason was doing fantastic and breathing on his own just about 12 hours after being born and considered “large” for a 29 weeker. They considered him just an “eat and grow” baby which was wonderful news! All was going well test after test coming back normal, until one day Ashley went in and noticed Mason was back on oxygen. She was told Mason had a spell that evening and believed he needed a little bit more help to breath, this was around 2 weeks of Mason’s life. At 1 month of life is when Joshua and Ashley received the life changing news they had never expected to hear. Mason’s 3rd brain ultrasound had some back showing signs of PVL and the more serious cystic kind. They were told that Masons future was very bleak and to expect him to basically be a vegetable. Ashley and Joshua agreed to not allow this to be Mason’s future and agreed they would always do anything in their power to give Mason the best chance at life as possible. Since leaving the hospital at 47 days of life, Mason has had PT/OT multiple times a week. He started prop sitting around 12 months, army crawling at 17 months, 4 point crawling pulling to stand at 18 months and attempting to cruise around 20 months. Mason knows his ABC, can count to 10 and speak 7 word sentence. His doctors considered him a “Medical Miracle”. When Mason turned 2 his parents started asking more questions on what they could do to help Mason achieve every child’s goal of walking running jumping, this is when they were recommended to look into SDR. Being that they always want the best for Mason they decided to go to the best, Dr. Park in ST Louis, MO. Ashley focused on getting his package together and submitted it. Five weeks after the packet was mailed out Ashley received the call Dr. Park believes Mason will be a great candidate for the surgery and even a secondary surgery to eliminate scissoring. Dr. Park believes this surgery will allow Mason to take INDEPENDANT STEPS IN THE FUTURE!!! This would be a dream for not only Mason but his whole family.