100Brokers Members voted and we are very pleased to announce that we will be sending a cheque in the amount of $10,000 to Lucy Van Kendall & Family Recipient of the 3rd Quarter vote of 2020.
“Thank you so much for thinking of us and submitting our family for the 100 Brokers Who Care grant. It was a wave of positivity and support that we needed. It’s been incredibly challenging fighting through this and knowing that a group of complete strangers had a group discussion & selected us means so much. Please pass our love to the rest of the team!”
Lucy was born in April 2020 and diagnosed with Spinal Muscular Atrophy (SMA) 5 weeks later. SMA is a genetic disease affecting the central nervous system, peripheral nervous system, and voluntary muscle movement (skeletal muscle). Most of the nerve cells that control muscles are located in the spinal cord, which accounts for the word spinal in the name of the disease. Her life expectancy is 2 years without treatment.
Lucy is a good candidate to receive a groundbreaking gene therapy treatment for SMA called Zolgensma which could save Lucy’s life. This will NOT cure her, but it will hopefully replace 40-60% of the missing gene and allow Lucy to live, but there will be many costs for them for the long term, from wheelchairs, to treatments, nurses, care, help, and more. I am hoping that this $10k can help them with all the extra costs.
Thank you to Laura MacCormack for bringing this Cause to our attention.
Nomination Story
The “Van Kendalls” – Laura, Scott, Sullivan (2017) & Lucy (2020). They live in Vancouver and they are my clients.
In 2015, they got married and started their family in 2017. Lucy was born in April 2020 and they found out 5 weeks after she was born that Lucy has SMA. Spinal muscular atrophy (SMA) is a genetic disease affecting the central nervous system, peripheral nervous system, and voluntary muscle movement (skeletal muscle). Most of the nerve cells that control muscles are located in the spinal cord, which accounts for the word spinal in the name of the disease. Her life expectancy is 2 years without treatment.
Lucy is a good candidate to receive a groundbreaking gene therapy treatment for SMA called Zolgensma. Zolgensma could save Lucy’s life. They started a fundraiser and Lucy is getting the treatment in September. But this will NOT cure her, it will hopefully replace 40-60% of the missing gene and allow Lucy to live, but there will be many costs for them for the long term, from wheelchairs, to treatments, nurses, care, help, and more. I am hoping that this $10k can help them with all the extra costs.
Currently they are living in a small 2 bedroom apartment, with 2 kids, and nurses there on rotation and Scott working from home for his job to keep the family going financially (working from the kitchen, as Lucy sleeps in the living room as they need the space for all the machines required for breathing at night, feeding through a tube, etc).
Lucy will need a lot of care for the rest of her life.
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