Aaron and Ryan Leukodystrophy Support
Donation protected
We, Matt & Lara, need your help in getting $5000 together for a diesel generator for our good friend Mandy Munteanu and her beautiful twin boys Aaron&Ryan. We will do the 70.3 Iron Man in Busselton WA to raise money and awareness for this extraordinary family and need your help!
Ryan was diagnosed with Leukodystrophy (vanishing white matter disease) at age 3. Two years later Aaron was also diagnosed with the same disease. Both boys were normal healthy boys until then, running around and getting into mischief, as boys do.
This rare disorder affects white matter in the brain and the growth or development of myelin sheath (fatty tissue that covers nerve fibres).
It means their motor function and muscle rigidity is reduced, while sight and hearing degenerates.
http://ulf.org/vanishing-white-matter-disease
Mandy remembers been told by the doctor she “had more chance of winning lotto" than to have the two boys with the disease.
Ryan and Aaron are her only children and she loves them with all her heart. She does all that she can for them to give them the best life possible. They are now 20 years old and both need 24 hour care - which Mandy does herself with help of care workers.
Mandy and the boys live in rural Gidgegannup, one hour from Perth in Western Australia. She has her lovely country home all set up for wheelchair access; all areas in and around the house are modified to make sure the boys have full access. They love living in the hills, being surrounded by nature and their animals and Mandy can’t imagine not having the boys there with her.
Unfortunately because of the remote location of Gidgegannup and the surrounding bush area, it is prone to power outages. Every time Mandy’s house looses power the boys’ health is at risk. Because they cannot control their own body temperature the air conditioning and heaters are of great importance to them. No power also means no use of the hoist to transfer Ryan and no use of his electric bed.
Every power outage causes Mandy and the boys great stress, especially in summer when too much heat triggers seizures. Therefore a big diesel generator that can take over would make a very big and important difference in their lives in Gidgegannup and more peace of mind for Mandy.
Please help us raise this money for them! It will mean the world to them.
And we will do our best to get attention for this rare disease and this remarkable family during the Iron Man :)
Thank you all so much!
Ryan was diagnosed with Leukodystrophy (vanishing white matter disease) at age 3. Two years later Aaron was also diagnosed with the same disease. Both boys were normal healthy boys until then, running around and getting into mischief, as boys do.
This rare disorder affects white matter in the brain and the growth or development of myelin sheath (fatty tissue that covers nerve fibres).
It means their motor function and muscle rigidity is reduced, while sight and hearing degenerates.
http://ulf.org/vanishing-white-matter-disease
Mandy remembers been told by the doctor she “had more chance of winning lotto" than to have the two boys with the disease.
Ryan and Aaron are her only children and she loves them with all her heart. She does all that she can for them to give them the best life possible. They are now 20 years old and both need 24 hour care - which Mandy does herself with help of care workers.
Mandy and the boys live in rural Gidgegannup, one hour from Perth in Western Australia. She has her lovely country home all set up for wheelchair access; all areas in and around the house are modified to make sure the boys have full access. They love living in the hills, being surrounded by nature and their animals and Mandy can’t imagine not having the boys there with her.
Unfortunately because of the remote location of Gidgegannup and the surrounding bush area, it is prone to power outages. Every time Mandy’s house looses power the boys’ health is at risk. Because they cannot control their own body temperature the air conditioning and heaters are of great importance to them. No power also means no use of the hoist to transfer Ryan and no use of his electric bed.
Every power outage causes Mandy and the boys great stress, especially in summer when too much heat triggers seizures. Therefore a big diesel generator that can take over would make a very big and important difference in their lives in Gidgegannup and more peace of mind for Mandy.
Please help us raise this money for them! It will mean the world to them.
And we will do our best to get attention for this rare disease and this remarkable family during the Iron Man :)
Thank you all so much!
Organizer
Bob Wagland
Organizer
