As the days passed Kira presented to be a bright and thriving baby bringing joy and happiness to her new family and friends.
Sadly, within a month Kira became sick with a series of hospitalizations. By the time she was five months old she was diagnosed with a rare genetic disorder called Spinal Muscular Atrophy, having the most severe and life threatening form called SMA Type 1.
This condition causes degeneration of motor neurons, which leads to respiratory failure and loss of voluntary muscle movement. Babies who display symptoms at birth have the lowest level of functioning, with 70% of babies diagnosed with SMA Type 1 passing away by the age of two, and the remaining not living past the age of 4.
Unfortunately there is no cure for this disease, but there is hope with a new treatment that was FDA approved in December 2016. The clinical trials only go back a few years, so although not much is known about long term prognosis, the results from the treatment may greatly improve Kira’s quality of life and enable her to reach basic milestones.
We can’t predict what the future holds or if this treatment will be successful for Kira, but this medication and others that are currently undergoing trials are breakthroughs that give this family hope where otherwise there would be none.
The families of Ron and Victoria are reaching out and asking everyone they know to help them cross this painful and life changing journey. Ron and Victoria’s dedication and optimism for their family has been nothing short of amazing and we hope to do anything we can to support them through these new set of challenges.
Funds raised will help with treatment costs for Kira, as well as ease the financial burden of Victoria not being able to return to work while caring for Kira during this difficult time.
Anyone who is able to give to this family in their time of need is greatly appreciated and will be held in our families hearts and prayers forever.
Thank you from the bottom of our hearts, and God Bless Kira and the Hansen Family.
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