Fred's Fight
Donation protected
I have set up this campaign to help my dear friends and their gorgeous boy Fred. On the 16th March 2018, the day before Fred's 1st birthday, he was diagnosed with a rare genetic syndrome, Phelan Mc Dermid or P-MS. This syndrome is prevalent in every 2.5 - 10 people out of every million.
People with P-MS typically have moderate to severe developmental and intellectual impairment, most do not acquire functional language, and about 75% have been diagnosed with an autism spectrum disorder. Behavioral issues may stem from autism (e.g., repetitive behaviors), from poor communications skills, or from an unknown origin. Sleep disorders are commonly reported, as are difficulties with toilet training, and problems with swallowing and eating. About 40% of people develop seizures which can range from mild to severe. Children regress in ability and it is unknown why.
This little boy, who deserves the world, may never walk, run or jump. He may never talk or communicate effectively. His parents may never hear him say mum or dad. He has never slept more than a few hours since he was born and has difficulty eating already. Could you imagine if this was your child deteriorating before your eyes? It is so unfair, so breathtakingly unfair.
They do not only face the devastation of this news but the battle of the Australian system. Because Fred is not an Australian citizen due to his parents being NZ citizens he does not qualify for disability services or funding. They will not be able to access much needed therapy or allowances so they can access aids and the services he requires. Because he has this condition it is going to be difficult to be granted permanency.
They are currently in conversation with an immigration agent to navigate this journey. However, the reality of this is thousands of dollars that they do not have. You may ask why not just go back to NZ? Leaving would mean they would have to uproot their older children, leave good jobs and leave behind a home they would not recoup their money on and debt they could not service. Not to mention the NZ disabilities service really cannot offer their Fred much.
There are therapies and clinics that have made significant improvements for children with neurological issues in the bigger cities here. Research shows the sooner a child access these types of intensive services the better the outcome due to the neuroplasticity of the brain and capacity as a younger child. As you can imagine this family just want to take their boy there as soon as possible, but at $180 an hour it feels impossible for this family currently.
If you could spare anything at all it would help this family in unimaginable ways. The bank account linked to this campaign is in Fred’s mother - Lisa’s name and has been kept seperate for donations. All donation money will be spent directly on treatment and gaining Australian residency for Fred for long term support. Please help restore some hope and future for this little boy and his family.
Thank you so much.
Stacey Hagedorn
Rockhampton, QLD
People with P-MS typically have moderate to severe developmental and intellectual impairment, most do not acquire functional language, and about 75% have been diagnosed with an autism spectrum disorder. Behavioral issues may stem from autism (e.g., repetitive behaviors), from poor communications skills, or from an unknown origin. Sleep disorders are commonly reported, as are difficulties with toilet training, and problems with swallowing and eating. About 40% of people develop seizures which can range from mild to severe. Children regress in ability and it is unknown why.
This little boy, who deserves the world, may never walk, run or jump. He may never talk or communicate effectively. His parents may never hear him say mum or dad. He has never slept more than a few hours since he was born and has difficulty eating already. Could you imagine if this was your child deteriorating before your eyes? It is so unfair, so breathtakingly unfair.
They do not only face the devastation of this news but the battle of the Australian system. Because Fred is not an Australian citizen due to his parents being NZ citizens he does not qualify for disability services or funding. They will not be able to access much needed therapy or allowances so they can access aids and the services he requires. Because he has this condition it is going to be difficult to be granted permanency.
They are currently in conversation with an immigration agent to navigate this journey. However, the reality of this is thousands of dollars that they do not have. You may ask why not just go back to NZ? Leaving would mean they would have to uproot their older children, leave good jobs and leave behind a home they would not recoup their money on and debt they could not service. Not to mention the NZ disabilities service really cannot offer their Fred much.
There are therapies and clinics that have made significant improvements for children with neurological issues in the bigger cities here. Research shows the sooner a child access these types of intensive services the better the outcome due to the neuroplasticity of the brain and capacity as a younger child. As you can imagine this family just want to take their boy there as soon as possible, but at $180 an hour it feels impossible for this family currently.
If you could spare anything at all it would help this family in unimaginable ways. The bank account linked to this campaign is in Fred’s mother - Lisa’s name and has been kept seperate for donations. All donation money will be spent directly on treatment and gaining Australian residency for Fred for long term support. Please help restore some hope and future for this little boy and his family.
Thank you so much.
Stacey Hagedorn
Rockhampton, QLD
Organizer
Stacey Hagedorn
Organizer
Ironpot QLD
