When the promise of Gene therapy does not apply to your child

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The Rare hour with Christopher Velona

Christopher Velona

45 episodes

20 hours ago

Join us for a one-hour rare disease community support group. Here we will discuss the topics that affect your daily life in rare diseases as well as special needs. Being a parent is hard but having a child in rare disease takes a special kind of person and the journey is filled with potholes along the way. The pathway may never be clear, but together we can navigate by supporting each other. P.S. we are not a glum lot!

Mental Health

Health & Fitness

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Mental Health

Health & Fitness

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When the promise of Gene therapy does not apply to your child

The Rare hour with Christopher Velona

49 minutes 35 seconds

3 years ago

When the promise of Gene therapy does not apply to your child

On today's show, our guest is Batten CLN8's dad, Muhammad Dawood, who talks with us about Hannah, his terminally ill child.

From a normal life to a nightmare of testing to broken hopes for therapy. Muhammed explains what it was like, what happened and what is like now in today's rare disease world and gives a few important tips for parents just coming into this disease.

To support Hannah and follow her on social media:

Instagram: @hanna_cln8