Leo's Pride actually began as a simple prayer/support page for our son Leo. Leo was diagnosed with Spinal Muscular Atrophy soon after birth. We were thankful to have a large support network that embraced our family with love and support. Our first Go Leo Go fundraiser was such a huge success that we formed the non-for profit, Leo's Pride. Since then we have focused on several different areas with a large emphasis on helping improve qualify of life by supporting families by opportunity and inclusion.
As you can imagine, it can be difficult to get out to not only medical appointments, but for fun adventures to the zoo or to visit friends or run errands. The right durable medical equipment can make this a safe and comfortable. We have donated to the Cure SMA medical equipment pool to help provide items that help with mobility and comfort.
Our first event raised enough funds to purchase an accessible van for Leo and inspired our Love Every One (LEO) grant. Our LEO Grant is for families with a child in need of an accessible van. A mode of transportation is critical and is hard to find funding. This grant can help close the gap to make that purchase or modification of a vehicle possible.
We have also raised money for research for SMA. We are excited about the current Cure SMA pipeline and hope more drugs will be available in the future.
One thing we have learned with having a child with special needs, is that this population has been left behind. They are often segregated, bullied, and excluded from activities simply because of a physical limitation or because they are different. Just a small example, Leo goes to preschool and they were having picture day for his class. He was so excited! He helped pick out his outfit, we styled his hair and just had a good time talking about his first picture day. Well, we get to school and go in for the picture and they had decided to set up the photographer on a stage that is not accessible to wheelchairs. It is like a dagger to the heart. It is mind blowing the level in which this population has been left behind. It is just not acceptable. Part of our mission statement includes promoting an inclusive world. This is a world that does not segregate, but includes children of all abilities. This has led to us partnering with Saluda Shoals Park to help build an inclusive playground.
An inclusive playground goes far beyond a handicapped accessible playground. Often accessible playgrounds are simply checking a box to meet ADA guidelines. These guidelines may encourage things like easy access or ramping, but it does usually encompass play and interaction for all abilities. For example, there may be a ramp on a play structure, but it is narrow and allows nothing else for a child in a wheelchair to actually do to play. The ground surface may still be mulch, limiting the child to a small area.
Inclusive playgrounds are not referring to wheelchair accessibility. While they are accessible, they exceed requirements and also include components and aspects that encourage all abilities and children of all diagnoses to have a fun, safe environment to play in. For example, tactile and auditory experiences for those with a visual impairment, nooks and crannies to create a secure safe place when over stimulated, elements that calm and encourage focus, and equipment that encourages fine and gross motor skills are just a few of the many things taken into consideration.
Play looks different for every child. It is not always climbing and sliding. An inclusive playground includes elements that not only promote physical activity, but encourage social interaction and self development by stimulating the senses such as sight, sound, touch, proprioception and vestibular sense. Hopefully one day this is just how playgrounds will be built. We won't have to specify "inclusive", it will just be the way things are.
LOVE EVERY ONE. PROMOTING AN ALL INCLUSIVE WORLD. SPREADING AWARENESS OF SPINAL MUSCULAR ATROPHY (SMA), FUNDING RESEARCH AND SUPPORTING CHILDREN AND FAMILIES AFFECTED BY CHILDHOOD DISEASES AND DISORDERS.