Help Lily kick CASK!
Donation protected
I'm a good friend of the Barker family and started this fundraiser to help pay for a unique therapy opportunity for Lily.
Lily Barker was born with a rare genetic disease called CASK MICPCH. This is caused by a random mutation on her CASK gene which is found on the X chromosome. The CASK gene is essential for healthy brain development and when there is a change to this gene, the effects are catastrophic. As a result of this mutation, Lily will be severely disabled for the duration of her life. She lives with hearing loss, a cortical vision impairment, microcephaly, low muscle tone in her core and global developmental delays. Things that you and I take for granted, like walking, talking, eating, and taking care of ourselves will be immense challenges for Lily. Daily physical, occupational, speech, vision and other therapies are and will continue to be a part of Lily’s routine throughout her life as they will provide the best opportunity for her to reach her full potential.
A team of researchers has been studying the CASK gene at Virginia Tech and have incorporated their findings of CASK in their intensive pediatric therapy program. Families have traveled from across the world to participate in this specialized therapy and the children who participate make lasting leaps and bounds in their development. A spot has been secured for Lily from October 17- November 11, 2022. Lily and her mom, Holly, will need to travel from Utah to Virginia while Lily participates in four hours of individualized intensive therapies daily for five days a week for four weeks. She will be 15 months old and ready to start #kickingCASK!
The weight of this miracle is, however, bigger than the Barker family can bear alone. Because insurance won’t cover the cost of this therapy ($14,000), they are humbly reaching out for help. Any amount you are able to donate will help them reach their goal of $20,000, which will be used to pay for the therapy, as well as travel and housing during the four weeks Lily and Holly will attend the therapy in Virginia. If there are leftover funds, they will be donated to another CASK family trying to raise money for their child to attend the therapy.
Lily Barker was born with a rare genetic disease called CASK MICPCH. This is caused by a random mutation on her CASK gene which is found on the X chromosome. The CASK gene is essential for healthy brain development and when there is a change to this gene, the effects are catastrophic. As a result of this mutation, Lily will be severely disabled for the duration of her life. She lives with hearing loss, a cortical vision impairment, microcephaly, low muscle tone in her core and global developmental delays. Things that you and I take for granted, like walking, talking, eating, and taking care of ourselves will be immense challenges for Lily. Daily physical, occupational, speech, vision and other therapies are and will continue to be a part of Lily’s routine throughout her life as they will provide the best opportunity for her to reach her full potential.
A team of researchers has been studying the CASK gene at Virginia Tech and have incorporated their findings of CASK in their intensive pediatric therapy program. Families have traveled from across the world to participate in this specialized therapy and the children who participate make lasting leaps and bounds in their development. A spot has been secured for Lily from October 17- November 11, 2022. Lily and her mom, Holly, will need to travel from Utah to Virginia while Lily participates in four hours of individualized intensive therapies daily for five days a week for four weeks. She will be 15 months old and ready to start #kickingCASK!
The weight of this miracle is, however, bigger than the Barker family can bear alone. Because insurance won’t cover the cost of this therapy ($14,000), they are humbly reaching out for help. Any amount you are able to donate will help them reach their goal of $20,000, which will be used to pay for the therapy, as well as travel and housing during the four weeks Lily and Holly will attend the therapy in Virginia. If there are leftover funds, they will be donated to another CASK family trying to raise money for their child to attend the therapy.
A sincere thank you for any donation, big or small!
See how this therapy has benefited other kiddos with CASK .
Want to read more about Lily's story and keep update on her progress?
Instagram - @LilykickingCASK
Facebook - Holly Barker
Learn more about the CASK Gene Foundation here.
Organizer and beneficiary
Jamie Bailey
Organizer
Fort Collins, CO
Holly Barker
Beneficiary