Felt like we were just starting to get used to things when we were launched into the busiest summer ever! We attended the National SMA Conference in D.C. in June. There we met hundreds of other SMA families and gained valuable new information at the workshops offered there. Heidi’s clinical trial physician and pulmonologist were both there.
We met Senator Kay Hagan, a staff liaison of Senator Richard Burr, and our Congressman David Price in efforts to lobby for amends to FDA process and expansion of compassionate use of clinical trial drugs for quickly fatal diseases when the drugs are showing clear, clinically meaningful results. The SMA community grows impatient as children die when treatments are so close within reach.
After D.C. we drove up to the Shriner’s Hospital in Philadelphia. Rick wanted to see if they had advice regarding supports and motorized wheelchairs. The traffic between D.C. and Philly was awful! Hope never to have to go from D.C. to anywhere north of there on I-95 again!
We celebrated Heidi’s first birthday at the end of June! Then in July we made the trip to Florida for Heidi’s fourth clinical trial treatment, vacationing first in Venice before driving up to Orlando. We had hoped to have a van for the trip, but our Medicaid modification funding still has not come through. We had to rent a van for nearly a thousand dollars. Getting our modified van will mean a great change in our family’s quality of life if we are ever really able to get it. Heidi likes to get out and about, but it is difficult when we have no good means to secure her in a vehicle that she can tolerate for long.
The house in Venice had a huge open floor plan with a pool just off the back that seemed to have been constructed especially for Heidi’s special needs! In Orlando, while Rick took Heidi to get her dose, I watched Cassie tackle the Nickelodeon Resort’s water park with tireless enthusiasm.
The next morning before we left, Heidi had an evaluation for the trial. We met up with a couple of other SMA families at there at the hospital, one of which we had met online and in person before. The other family was newly diagnosed and had moved down all the way from Michigan to participate in the trial.
My older children just moved into an apartment in Raleigh to start the new school year. Cassie starts middle school in two days. With the summer over and school starting this week, maybe things will slow down for a bit?