When you see 4 year-old Camille smile, you would never know she is battling a disease that affects her ability to control all of her muscles.
Camille has Spinal Muscular Atrophy (SMA) type 2, which is a progressive degenerative neuromuscular disease. She is not expected to ever stand or walk, pending further progression with treatment.
Her parents say the diagnosis changed their family’s life. “It’s completely opposite of everything you think and dream for your child before diagnosis. It rocks your world initially, but then you figure out that you and your child can still live life to the fullest, it just might look a little different,” said Camille’s father Brandon.
A New Perspective
Camille, her parents and their 1-year-old son Jude have travelled to Orlando six times in the past year from their home in Louisiana to receive treament at Nemours Children’s Health. Their doctor, Dr. Richard Finkel, is a SMA specialist and the first to receive the only FDA approved treatment for SMA.
The Callais Family learned about Ronald McDonald House through another former RMH family and through their doctor’s office. They say the House was exactly what they needed.
“The House is very well taken care of and anything we could ever need is readily available and free. Also, just to be able to walk down the street to the hospital for all of our visits and treatment can’t be beat.”
Every single time, the family says they are welcomed with open arms. “We have been here so often, the staff remembers us and we always feel at home and feel like part of a family here,” said Brandon.
The Cost of Care
Beside providing comfort and care to the family, Brandon Callais says RMH has provided financial support to his family during their frequent trips. “This is a great aspect of RMH. Hotel costs quickly add up. We are fortunate enough to be able to contribute some for each of our stays, but we know most families aren’t able.”
The Callais Family says they are grateful for everything that RMH has provided them and they hope that the community will continue to support the charity in the years to come.
“People that have never had a sick child may not understand the stress that comes with frequent hospital stays or traveling for doctor visits. Knowing that we are staying at RMH is one less thing we have to worry about and takes a big burden off our family,” said Brandon.