Get Miller on the Move
Donation protected
❤️❤️
Miller oflynn is an 8 year old boy and lives on the Sunshine Coast. Miller had never been a typical child, he was always developmentally delayed and quite unstable on his feet., however there were no real concerns until he caught a cold in 2015, which made his disease surface. His cold caused a regression and within 2 weeks miller had lost the ability to speak, eat and, to walk independently. Through an MRI and genetic testing, Miller was diagnosed with PKAN- Pantothenate kinase-associated neurodegeneration.
People with PKAN lack a chemical necessary to metabolize a vitamin in the brain. Without normal levels of this metabolite, part of the brain degenerates, causing severe problems with walking, coordination, vision, speech and swallowing. The illness is particularly cruel in childhood, when uncontrollable twisting movements can be extreme, causing pain and even bone fractures. Awareness is not affected, making the suffering imposed by the disease especially poignant. Many children with PKAN die before the age of 10. Pkan effects one in one million people.
Millers condition has deteriorated quite rapidly, his air ways are now effected by dystonia. The spasms pull his tongue back and he gasps for air. He needs to be laying down in order to obtain the safest air way, he can no longer sit up on his own, and his body is constantly twisting and spasming, he cry’s in pain when he is traveling in the car, which makes appointments very challenging and unsafe. leaving the house for any reason is really difficult for us as we don’t have a suitable vehicle. our specialists have given us a seat belt miller could use to lay across the back seat, and a travel approval certification however Miller has a little sister who is in a car seat so we don’t have the room. Were saving as much as we can have have tried to fundraise and although our friends and family have all done an amazing job at the rate we are going I don’t think we will have a vehicle before my sweet Miller passes away.
We want to take him to see the water, and to stroll along the beautiful beaches. To swing at the park and see his friends and family, but he’s stuck laying on his mattress on the floor at home. Our Memories are all we will have.
A larger safer vehicle would be life changing. Truly, Miller would be able to live his life with dignity and doing the things every little boy deserves to be doing.
Thank you so much for reading,
Miller oflynn is an 8 year old boy and lives on the Sunshine Coast. Miller had never been a typical child, he was always developmentally delayed and quite unstable on his feet., however there were no real concerns until he caught a cold in 2015, which made his disease surface. His cold caused a regression and within 2 weeks miller had lost the ability to speak, eat and, to walk independently. Through an MRI and genetic testing, Miller was diagnosed with PKAN- Pantothenate kinase-associated neurodegeneration.
People with PKAN lack a chemical necessary to metabolize a vitamin in the brain. Without normal levels of this metabolite, part of the brain degenerates, causing severe problems with walking, coordination, vision, speech and swallowing. The illness is particularly cruel in childhood, when uncontrollable twisting movements can be extreme, causing pain and even bone fractures. Awareness is not affected, making the suffering imposed by the disease especially poignant. Many children with PKAN die before the age of 10. Pkan effects one in one million people.
Millers condition has deteriorated quite rapidly, his air ways are now effected by dystonia. The spasms pull his tongue back and he gasps for air. He needs to be laying down in order to obtain the safest air way, he can no longer sit up on his own, and his body is constantly twisting and spasming, he cry’s in pain when he is traveling in the car, which makes appointments very challenging and unsafe. leaving the house for any reason is really difficult for us as we don’t have a suitable vehicle. our specialists have given us a seat belt miller could use to lay across the back seat, and a travel approval certification however Miller has a little sister who is in a car seat so we don’t have the room. Were saving as much as we can have have tried to fundraise and although our friends and family have all done an amazing job at the rate we are going I don’t think we will have a vehicle before my sweet Miller passes away.
We want to take him to see the water, and to stroll along the beautiful beaches. To swing at the park and see his friends and family, but he’s stuck laying on his mattress on the floor at home. Our Memories are all we will have.
A larger safer vehicle would be life changing. Truly, Miller would be able to live his life with dignity and doing the things every little boy deserves to be doing.
Thank you so much for reading,
Fundraising team: Valkyrie Fitness (6)
Jessica Ryder
Organizer
Bli Bli QLD
Eden Stubbings
Team member
Stephanie Marshall
Team member
Tellea Ann Engle
Team member
Kacey Tomholt
Team member
