Written by Griffin Becker, 2018 Awardee of the Hannah Ostrea Memorial College Scholarship for siblings affected by childhood rare disease.
When my sister was first diagnosed nearly a decade ago, there was virtually no support in Southern Nevada. There wasn’t even a pediatric rheumatologist in town to treat her.
I think connecting parents, children, health care providers, advocates, nonprofits and the public sector (especially schools) is the key to success. My mom got involved with the Arthritis Foundation by volunteering to serve on a regional JRA committee, and it was through this involvement that she was able to connect with other families and resources here in Southern Nevada. Until then we were on our own.
When my sister entered kindergarten, the teachers and administrators at her school were concerned about having a child with JRA. They assumed she would be unable to take part in physical education and would have to sit on the sidelines during recess. My parents had to educate them about JRA and about my sister’s specific abilities, including times when she might indeed have to sit on the sidelines.
Schools don’t always have the resources in place to accommodate children with certain medical conditions, although I believe they make an effort. I would like to see representatives from various groups, such as the Arthritis Foundation, have an opportunity to present informational materials or workshops to public, private and charter schools so educators have a better understanding of various diseases and resources to contact should they wish or need to learn more. Depending on the rare disease, educating a child’s classmates is also an important strategy so they will become more accepting and supportive.
When my sister turned seven she wanted to play softball. My parents worried about possible
injuries, but they knew not giving her the chance to experience the sport might be far more
damaging to her self-confidence. The nonprofit softball organization they found was welcoming, but the coaches, like her teachers, were worried about having a little girl with JRA on the team. Again, my parents had to advocate and educate on Jenna’s behalf. Coaches, too, can benefit from educational outreach. In some cases and for some illnesses, adaptive equipment may be available to help some children, but the nonprofit sports organizations may not be aware of this or that there are nonprofit organizations like the Little Miss Hannah Foundation that may be able to provide support and resources.
I think everyone who touches the life of a child with a rare disease is an advocate on some level. Nurses, parents, siblings, teachers, doctors, coaches, physical therapists, friends, legislators – children need every one of them to be a beneficial presence and to help them have a voice. The best way for our Southern Nevada community to support families of children diagnosed with rare diseases is to be accepting and be willing to learn about the child’s abilities rather than focusing exclusively on their disabilities.