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Leonard Family

Leonard Family

My name is Stephanie Leonard, and I have two sons, Ames and Asher. When they were babies, we started noticing they were delayed with milestones and didn’t take their first steps until after their second birthday. After countless hours of research, physical therapy, doctor appointments, MRIs, and genetic testing we finally received our answer as to why Ames and Asher were struggling.

On February 11, 2016 our lives changed forever. Ames and Asher were diagnosed with Spinocerebellar Ataxia (SCA) at the age three. It was heartbreaking. SCA is a rare, neurodegenerative disease causing poor coordination and balance (ataxia), difficulties with speech, swallowing and cognitive impairment as well as tremors and sometimes seizures. Sadly there is no cure, and it is often fatal.

Due to the Ataxia, Ames and Asher struggle with weakening of their legs and are currently wearing orthotics to help with balance, using walkers for stability for short distances and a wheelchair for longer. The twins also have difficulties with coordination of their hands, making it hard to achieve daily tasks such as eating with utensils, buttoning their clothes, and writing. Each day presents new challenges to overcome, but we have found much comfort through the special friendships we’ve established with other members of the National Ataxia Foundation, and we proudly call them our forever family.

Although this terrible dis ease has consumed our thoughts, filled our calendars with therapy and doctor appointments, and diminished our bank accounts, we strive to give Ames and Asher the most comfortable and normal life possible. We feel incredibly blessed to be the parents of such sweet boys who continue to amaze us with their social friendliness and eager playfulness. Over time we have shifted our focus to appreciate all that Ames and Asher can achieve daily rather than focusing solely on their limitations.

If we could offer any advice to others facing the same struggles, it would be this:

“Life is not easy. We have to view our struggles as a tool to make us stronger, accept the unaccepted, hope for the impossible, see beauty in everything, be thankful for every single thing around us, never back down from our passions, pray, believe, and have faith. We are the authors to our story and how we choose to write it.”

After reflecting on the year we have had, one thing is certain… We want Ames and Asher’s story to have a beautiful ending. Today we are choosing to take baby steps through our challenged moments of heartbreak, and continuing to find joy in life as we journey through it.

1 thought on “Leonard Family

  1. Thank you for sharing your story. What a blessing for these boys to have such a great and supportive family.

    I have been researching this condition as I am a physical therapist who works with kids in schools. I am currently seeing a 3 1/2 year old boy who is being tested to determine help determine which type of cerebellar ataxia he may have. The condition has worsened each month over the last 6 months. He is now falling all the time, not walking very much without help and is not able to keep up with his classmates. It has been so tough because we have tried to support his needs, strengthen his legs, improve his balance, but we see him constantly regressing. In the schools it is tough because we don’t get any medical information unless the parents allow it and the parents appear to be in denial as they don’t feel it is progressive. We aren’t even sure what tests have been done or what has been determined. We have attempted to trial walking devices, i.e., walkers, wagons to push, etc. but mom does not want them or other supportive devices. She won’t entertain orthotics despite the need. Despite not knowing, it is apparent that his mobility has decreased significantly, his speech is not improving, and he has become weaker and more unsteady.

    I just loved your attitude and commitment to your children and how you have accepted and decided to support them however you can and to do whatever is needed. It cannot be easy and I feel for you. I have been up at night sometimes worried for this little boy who is such a sweetheart and myself and my work partner feel helpless.

    I wondered for you and your family what part of PT has been most helpful for you? Have there been benefits to PT? Have there been toys, walking devices, adaptive equipment that has been helpful? We rely on play based therapy and are able to engage this little guy with therapy balls, trucks, trampolines, etc. I just want to try anything and everything to help this family.

    Again, thank you for sharing your story.
    Nicole

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