• Skip to primary navigation
  • Skip to main content
  • Skip to primary sidebar

Little Miss Hannah Foundation

Support for Families of Children Diagnosed with Rare, Life-Limiting, or Complex Medically Conditions. Childhood Rare Disease Advocacy.

Make a Donation Volunteer Apply for Services
  • About Us
    • Our Mission
    • Meet our Team
    • Photos/Videos
      • Photos
      • Videos
    • Latest News
    • Our Impact Results
  • Hannah’s Story
  • Programs
    • Medical-Therapy Equipment Assistance Program
    • College Scholarship
    • Childhood Rare Disease Advocacy
    • Family Support and Activities
  • Upcoming Events
  • Get Help
    • Become a LMHF Family
    • COVID-19 Resources
    • Resources
  • Get Involved
  • Contact us

May 25, 2018 by Carrie Ostrea

2018 Essay Scholarship Winner – Griffin Becker

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.

Filed Under: Blog, LMHF News Tagged With: 2018 Scholarship Recipient, Griffin Becker, Hannah Ostrea Memorial College Scholarship, Jenna Becker, Juvenile Rheumatoid Arthritis

Primary Sidebar

Our Upcoming Event!


Vegas Cares About Rare Kids 5K
February 28, 2021

 

Featured Programs


Medical and Therapy Equipment Grant Program

Site Info

  • About Us
  • Our Mission
  • Latest News
  • Hannah’s Story
  • Programs

Get Involved!

  • Become a LMHF Family
  • Upcoming Events
  • Donate
  • Volunteer
  • Rare Disease Advocacy

Contact Us

10624 S. Eastern Avenue, Suite A-847
Henderson, NV 89052
Phone: (702) 608-2488
Fax: (702) 541-9957

Privacy Policy

Connect With Us

  • Email
  • Facebook
  • Instagram
  • Twitter

Copyright © 2021· Little Miss Hannah Foundation · Site By New Wave Media Design
Little Miss Hannah Foundation is a 501(c)(3) tax-exempt nonprofit corporation, EIN# 45-3993921