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Help Harrison attend Idic15 Reach for the Stars
$10 raised
0% of $7.5k goal
1 contributor
4 Years running
Our third son Harrison suffers from an extremely rare condition called Isodicentric15. Isodicentric15 is a chromosome disorder that affects approximately 1000 families worldwide, with approximately 35 children affected by this disorder in Australia. ...
Our third son Harrison suffers from an extremely rare condition called Isodicentric15. Isodicentric15 is a chromosome disorder that affects approximately 1000 families worldwide, with approximately 35 children affected by this disorder in Australia. Harrison was diagnosed at the age of 11 months by doctors at the Mater Hospital; there is very little known about this condition by doctors in Australia, they are not even able to predict his life expectancyor how the disorder will affect him as he grows; whilst the disorder itself may not affect his life expectancy the complications that occur due to Isodicentric15 often do i.e. Harrison suffers from Gastroesophageal reflux (GORD) this is a complication that affects the stomach valve, which means he vomits uncontrollably and at times ruminates the vomit which can lead to choking.



This condition affects Harrison’s whole life on a daily basis. Harrison is non-verbal, he cannot tell you that he hurts or that he is hungry. Harrison is 5 and is incontinent; he has no awareness of being wet or soiled. Harrison has experienced a form of Epilepsy called Infantile Spasms – these seizures have subsided for the time being but can re-occur at any time. Harrison has low muscle tone, so tires very quickly and his coordination is affected. Harrison suffers with a form of Autism called Pervasive Development Disorder not otherwise specified. Harrison has sensory processing disorders. Harrison has a high threshold of pain tolerance, he hardly ever cries when he hurts himself even if he is badly hurt. Harrison is hyperactive and has hypermobility of his joints.There is also a risk of sudden unexplained death in children with this condition.



There is a 3 day conference in Minneapolis in July of this year. At the conference there will be sessions with specialists that deal with this condition regularly and are considered the experts in this field by their peers. There will also be sessions about what the future will hold for Harrison and will enable us to meet other families that are very similar to ours.

My husband and I are seeking your assistance to take Harrison to this conference, Harrison will be able to interact with other children affected by this disorder, and attend workshops aimed at helping him.Attending this conference will enable my husband and I to help our son reach his full potential, we will be able to meet parents of children who have the disorder and swap ideas on how to cope along with how to make sure our other children do not have their lives consumed by this disorder as well.
Financially attending this conference is out of our reach airfares for the 3 of us to attend will be in excess of $4500.00, we will also need to pay for registration and accommodation at the conference venue in Minneapolis whilst there.



There are also some additional expenses due to Harrisons needs, he will require a wheel chair whilst we are there as he has outgrown his stroller and we have not been able to save the $2500 for the specialist wheelchair / stroller he requires.



Any assistance you can provide to help us attend this conference will be greatly appreciated.

www.harrisonsheroichelpers.webs.com
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