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I have been meaning to post something on here for a while about a friend (and co-worker) of mine and his family.
I work with this guy every day, and I can't fathom what he and his partner are going through. We all try to help in any way we can, but sometimes, apart from a little money to the cause, a shoulder to cry on, and a friendly ear, it is easy to feel powerless to do anything for them.
Our employer and union have been fantastic, and our CEO has started a fundraising committee that I am a part of. We are about to have our first meeting, where we will start airing our suggestions for ways to help this poor family. Any ideas anyone has on here would be fantastic.
When they first found out about this horrific disorder/syndrome, and went to Starship, I managed to get in contact with Wayne Scurrah (thanks to Kalcod from this forum). He was most helpful. I asked if there would be any way he could get a couple of players to meet this family while they were at Starship. He went me one better, and hosted the family at the Storm game, and took them back to meet the players after. This was a huge treat for Sam, who loves Manu and Shaun Johnson. This effort on Wayne's part made me change my opinion of him.
There will be plenty of people helping them in the near future, but every little bit will make life that little easier and better for them. It is amazing how quickly things are happening for them (though it won't feel that way to the family). They were only diagnosed in the earlier this year, and were originally turned down for bone marrow transplants (because their prognosis, and the risks were so bad), but luckily they applied again and found perfect bone marrow matches. There is still a chance that Charlotte may not get the transplant (depending on how well Sam comes through, if at all). Charlotte has a few extra issues (including neurological problems) that make her a much riskier transplant, and they have said they will have to carefully weigh up Sam's results against Charlotte.
Below is a couple of articles about them and some links to some sites. I hope someone can help out.
Two Invercargill children with a rare genetic condition are heading to Auckland for a potentially life-changing transplant - but the family needs help.
Siblings Sam, 5, and Charlotte Gillan, 7, have Hurler-Scheie syndrome (MPS I-H/S), a genetic condition that affects many parts of the body.
They need to go to Auckland for up to 10 months for a bone marrow transplant.
Without the transplant, their prognosis is not good; without a successful transplant, they may not live much beyond their teenage years.
But the costs of the family travelling to Auckland are high.
Parents Tracy Allen and Jason Gillan have created a Givealittle donation page to help raise funds for treatment and living expenses, travel costs and entertainment for Sam and Charlotte while they are in Auckland.
The siblings were diagnosed in June after their parents became concerned their children could not lift their arms above their head.
They could not dress themselves and needed help on the toilet, Ms Allen said.
However, despite their health concerns the youngsters are like any other siblings - they fight, have hobbies, and go to school.
Sam loves rugby league and was over the moon when he met the Warriors last time the family was in Auckland.
He also loves rugby and the All Blacks. Charlotte is shy but loves fairytales and Barbie.
She also loves ballet but is unable to attend classes because of her physical restrictions, Ms Allen said.
As well as Hurler-Scheie syndrome, Charlotte has scoliosis of her spine and would need surgery for that in a couple of years.
She also has an enlarged tongue, a very narrow airway, a damaged spinal cord, an enlarged liver, walks on tip toes and needs a hearing aid.
Sam has a narrow airway, enlarged liver, thickening of his heart valves, an enlarged head and a slight curve in his spine.
He is also likely to need a cornea transplant.
The family was very close but she and her partner had not been able to bring themselves to tell their children fully what was happening, Ms Allen said.
"They think they're going up to see why they can't lift their arms up."
Before the transplant they would need enzyme replacement therapy and chemotherapy.
The bone marrow transplant would be risky but without it they would have years of suffering, Ms Allen said.
If it worked both children would be able to live relatively normal lives.
Mr Gillan's employer, South Port, and the Maritime Union of New Zealand had been very supportive with both setting up funds for the children, while her own colleagues at First National had also been supportive, she said.
South Port chief executive Mark O'Connor had formed a fundraising committee so workers could help.
Hurler-Scheie Syndrome is a mucopolysaccharidosis type I condition caused by an enzyme deficiency.
University of Otago professor of paediatric genetics Stephen Robertson said people with the disease were unable to break down certain chemicals in their cells.
It was the buildup of these chemicals which caused the symptoms Sam and Charlotte have.
A bone marrow transplant would put cells that possessed the needed enzyme back into the body, he said. The cells would move around the body and would prevent the progression of the disease, Mr Robertson said.
The disease was very rare and he estimated that only a handful per 100,000 people would have it.
The Lysomal Diseases New Zealand website says one in 500,000 people are born with the disease.
Donations for Sam and Charlotte could be made by visiting www.givealittle.co.nz/cause/Helpcharlotteandsam.
The family has also created a website with more information.
For more information on Hurler-Scheie syndrome and other lysosomal diseases visit www.ldnz.org.nz
- © Fairfax NZ News
https://www.stuff.co.nz/southland-times/news/9269557/Plea-for-family-in-need
Family swamped with donations
An Invercargill family whose two children have a rare genetic condition have been inundated with donations and messages of support from people throughout the country.
Sam Gillan 5, and his sister Charlotte, 7, have Hurler-Scheie Syndrome (MPS I-H/S) and need to go to Auckland for a potentially life-saving bone marrow transplant.
The Southland Times highlighted their plight yesterday.
The siblings' mother, Tracy Allen, said the response to the story had been overwhelming and the family had received thousands of dollars of donations to help them while they were in Auckland.
People had even made payments from Australia, while one woman had offered the family her spare car while they were in Auckland and another had offered to host the family on their farm for a break.
"Everyone is really generous," Ms Allen said. People might not think $5 was much, but it really did help, she said.
"I think a wee kid might have put their pocket money in because there was a donation of three dollars."
For more information visit www.charlotteandsam.co.nz.
To make a donation visit www.givealittle.co.nz/cause/Helpcharlotteandsam. For more information on Hurler-Scheie syndrome visit www.ldnz.org.nz.
- © Fairfax NZ News
https://www.stuff.co.nz/southland-times/news/9275215/Family-swamped-with-donations
Here are the websites
https://www.charlotteandsam.co.nz/
https://www.facebook.com/CharlotteAndSamHurlers?fref=ts
https://www.givealittle.co.nz/cause/Helpcharlotteandsam
I work with this guy every day, and I can't fathom what he and his partner are going through. We all try to help in any way we can, but sometimes, apart from a little money to the cause, a shoulder to cry on, and a friendly ear, it is easy to feel powerless to do anything for them.
Our employer and union have been fantastic, and our CEO has started a fundraising committee that I am a part of. We are about to have our first meeting, where we will start airing our suggestions for ways to help this poor family. Any ideas anyone has on here would be fantastic.
When they first found out about this horrific disorder/syndrome, and went to Starship, I managed to get in contact with Wayne Scurrah (thanks to Kalcod from this forum). He was most helpful. I asked if there would be any way he could get a couple of players to meet this family while they were at Starship. He went me one better, and hosted the family at the Storm game, and took them back to meet the players after. This was a huge treat for Sam, who loves Manu and Shaun Johnson. This effort on Wayne's part made me change my opinion of him.
There will be plenty of people helping them in the near future, but every little bit will make life that little easier and better for them. It is amazing how quickly things are happening for them (though it won't feel that way to the family). They were only diagnosed in the earlier this year, and were originally turned down for bone marrow transplants (because their prognosis, and the risks were so bad), but luckily they applied again and found perfect bone marrow matches. There is still a chance that Charlotte may not get the transplant (depending on how well Sam comes through, if at all). Charlotte has a few extra issues (including neurological problems) that make her a much riskier transplant, and they have said they will have to carefully weigh up Sam's results against Charlotte.
Below is a couple of articles about them and some links to some sites. I hope someone can help out.
Two Invercargill children with a rare genetic condition are heading to Auckland for a potentially life-changing transplant - but the family needs help.
Siblings Sam, 5, and Charlotte Gillan, 7, have Hurler-Scheie syndrome (MPS I-H/S), a genetic condition that affects many parts of the body.
They need to go to Auckland for up to 10 months for a bone marrow transplant.
Without the transplant, their prognosis is not good; without a successful transplant, they may not live much beyond their teenage years.
But the costs of the family travelling to Auckland are high.
Parents Tracy Allen and Jason Gillan have created a Givealittle donation page to help raise funds for treatment and living expenses, travel costs and entertainment for Sam and Charlotte while they are in Auckland.
The siblings were diagnosed in June after their parents became concerned their children could not lift their arms above their head.
They could not dress themselves and needed help on the toilet, Ms Allen said.
However, despite their health concerns the youngsters are like any other siblings - they fight, have hobbies, and go to school.
Sam loves rugby league and was over the moon when he met the Warriors last time the family was in Auckland.
He also loves rugby and the All Blacks. Charlotte is shy but loves fairytales and Barbie.
She also loves ballet but is unable to attend classes because of her physical restrictions, Ms Allen said.
As well as Hurler-Scheie syndrome, Charlotte has scoliosis of her spine and would need surgery for that in a couple of years.
She also has an enlarged tongue, a very narrow airway, a damaged spinal cord, an enlarged liver, walks on tip toes and needs a hearing aid.
Sam has a narrow airway, enlarged liver, thickening of his heart valves, an enlarged head and a slight curve in his spine.
He is also likely to need a cornea transplant.
The family was very close but she and her partner had not been able to bring themselves to tell their children fully what was happening, Ms Allen said.
"They think they're going up to see why they can't lift their arms up."
Before the transplant they would need enzyme replacement therapy and chemotherapy.
The bone marrow transplant would be risky but without it they would have years of suffering, Ms Allen said.
If it worked both children would be able to live relatively normal lives.
Mr Gillan's employer, South Port, and the Maritime Union of New Zealand had been very supportive with both setting up funds for the children, while her own colleagues at First National had also been supportive, she said.
South Port chief executive Mark O'Connor had formed a fundraising committee so workers could help.
Hurler-Scheie Syndrome is a mucopolysaccharidosis type I condition caused by an enzyme deficiency.
University of Otago professor of paediatric genetics Stephen Robertson said people with the disease were unable to break down certain chemicals in their cells.
It was the buildup of these chemicals which caused the symptoms Sam and Charlotte have.
A bone marrow transplant would put cells that possessed the needed enzyme back into the body, he said. The cells would move around the body and would prevent the progression of the disease, Mr Robertson said.
The disease was very rare and he estimated that only a handful per 100,000 people would have it.
The Lysomal Diseases New Zealand website says one in 500,000 people are born with the disease.
Donations for Sam and Charlotte could be made by visiting www.givealittle.co.nz/cause/Helpcharlotteandsam.
The family has also created a website with more information.
For more information on Hurler-Scheie syndrome and other lysosomal diseases visit www.ldnz.org.nz
- © Fairfax NZ News
https://www.stuff.co.nz/southland-times/news/9269557/Plea-for-family-in-need
Family swamped with donations
An Invercargill family whose two children have a rare genetic condition have been inundated with donations and messages of support from people throughout the country.
Sam Gillan 5, and his sister Charlotte, 7, have Hurler-Scheie Syndrome (MPS I-H/S) and need to go to Auckland for a potentially life-saving bone marrow transplant.
The Southland Times highlighted their plight yesterday.
The siblings' mother, Tracy Allen, said the response to the story had been overwhelming and the family had received thousands of dollars of donations to help them while they were in Auckland.
People had even made payments from Australia, while one woman had offered the family her spare car while they were in Auckland and another had offered to host the family on their farm for a break.
"Everyone is really generous," Ms Allen said. People might not think $5 was much, but it really did help, she said.
"I think a wee kid might have put their pocket money in because there was a donation of three dollars."
For more information visit www.charlotteandsam.co.nz.
To make a donation visit www.givealittle.co.nz/cause/Helpcharlotteandsam. For more information on Hurler-Scheie syndrome visit www.ldnz.org.nz.
- © Fairfax NZ News
https://www.stuff.co.nz/southland-times/news/9275215/Family-swamped-with-donations
Here are the websites
https://www.charlotteandsam.co.nz/
https://www.facebook.com/CharlotteAndSamHurlers?fref=ts
https://www.givealittle.co.nz/cause/Helpcharlotteandsam
