Help Grace see Zach in St Louis MI
Donation protected
Grace's medical condition is extremely rare with her and her siblings (3 of whom have died) being the only ones known in Australia.
It is almost 3 years since Grace met Zach at a Medical Conference in America. He is the only other young person Grace has met with the same syndrome as her other than her siblings.
Being the parent of a child with a disability can be a daunting task and when your disabled child is the only one in Australia with their particular disease it can be very difficult to find others who understand on the same level as you and this can lead to deep feelings of isolation.
Five of my seven children were born with Mucolipidosis, a rare, progressive, degenerative, genetic disease which stunts the child’s growth and causes many physical, intellectual and medical issues for the child and family to deal with. Initially, our children were diagnosed as having Mucolipidosis Type 2 aka Leroy’s I Cell disease. These children grow and function to the ability of a nine month old child and die by age 5-6.
When our older children got to that age it became apparent that they did not have what they were originally diagnosed with. It was another 15 years before it was proven that Mucolipidosis Type 2 and Mucolipidosis Type 3 aka Pseudohurler Polydystrophy were two extreme ends of the same disease and our children were then diagnosed (more correctly) as having a newly identified strain somewhere between these two diseases.
To our knowledge (and we continue to ask from time to time), our children are the only ones in Australia with their strain of Mucolipidosis.
Three of our five affected children have died. Jade was 21 and died from complications of Sleep Apnoea. Lucas was 23 and died from complications of quadriplegia and Faith was 14 and died from kidney failure and Nephrotic Syndrome which we chose not to treat. This was one of the most difficult decisions we have ever had to make.
Although our lives have been tough and we have faced many sad times, our children have wonderful, bright personalities and endearing natures with great senses of humour. Each day, they make it worthwhile to get up in the morning. They are full of courage and tenacity.
Our daughter Tegan is now 31 and the oldest in the world (that we know of) with this strain of Mucolipidosis. She is our miracle child.
Our youngest affected child, Grace, turns 18 this year and is one of her School’s School Captains for 2015. This year she will also attend the Ball for Senior Students in September.
Both Tegan and Lucas were School Captain in their final year at their School. We are extremely proud of our children and what they have achieved during their lives despite the many challenges they have faced because of what their disease did to their bodies during their life time.
In July this year, the International Society for Mannosidosis & Related Diseases is hosting the Fourth International Combined Scientific and Family Conference on Glycoprotein Diseases in St Louis, Missouri, USA. We would like to take our family and two carers to the US to attend this conference. We believe that not only would we be able to learn from the content of the Conference presentations but we would also have the opportunity to meet other families and their affected children, some with the same strain of Mucolipidosis that our children have.
To attend the Conference we need help with finances. The cost of attending as well as airfares, accommodation and other costs will be approximately $3,000 per person. My family consist of my husband, myself and our daughters Tegan and Grace who have Mucolipidosis 2/3; our son Christian and daughter Caryl (neither of whom have ever met another child like their siblings), my daughter’s two sons who are currently in my custody and two carers who look after Grace one weekend a month. (My son Christian and the two carers are contributing some of their own money.)
I am in the process of seeking local support for our family to attend the Conference and would greatly appreciate if you would consider gifting us even a small amount of funding to assist us to attend.
Can you please help us get Grace and Zach together again?
It is almost 3 years since Grace met Zach at a Medical Conference in America. He is the only other young person Grace has met with the same syndrome as her other than her siblings.
Being the parent of a child with a disability can be a daunting task and when your disabled child is the only one in Australia with their particular disease it can be very difficult to find others who understand on the same level as you and this can lead to deep feelings of isolation.
Five of my seven children were born with Mucolipidosis, a rare, progressive, degenerative, genetic disease which stunts the child’s growth and causes many physical, intellectual and medical issues for the child and family to deal with. Initially, our children were diagnosed as having Mucolipidosis Type 2 aka Leroy’s I Cell disease. These children grow and function to the ability of a nine month old child and die by age 5-6.
When our older children got to that age it became apparent that they did not have what they were originally diagnosed with. It was another 15 years before it was proven that Mucolipidosis Type 2 and Mucolipidosis Type 3 aka Pseudohurler Polydystrophy were two extreme ends of the same disease and our children were then diagnosed (more correctly) as having a newly identified strain somewhere between these two diseases.
To our knowledge (and we continue to ask from time to time), our children are the only ones in Australia with their strain of Mucolipidosis.
Three of our five affected children have died. Jade was 21 and died from complications of Sleep Apnoea. Lucas was 23 and died from complications of quadriplegia and Faith was 14 and died from kidney failure and Nephrotic Syndrome which we chose not to treat. This was one of the most difficult decisions we have ever had to make.
Although our lives have been tough and we have faced many sad times, our children have wonderful, bright personalities and endearing natures with great senses of humour. Each day, they make it worthwhile to get up in the morning. They are full of courage and tenacity.
Our daughter Tegan is now 31 and the oldest in the world (that we know of) with this strain of Mucolipidosis. She is our miracle child.
Our youngest affected child, Grace, turns 18 this year and is one of her School’s School Captains for 2015. This year she will also attend the Ball for Senior Students in September.
Both Tegan and Lucas were School Captain in their final year at their School. We are extremely proud of our children and what they have achieved during their lives despite the many challenges they have faced because of what their disease did to their bodies during their life time.
In July this year, the International Society for Mannosidosis & Related Diseases is hosting the Fourth International Combined Scientific and Family Conference on Glycoprotein Diseases in St Louis, Missouri, USA. We would like to take our family and two carers to the US to attend this conference. We believe that not only would we be able to learn from the content of the Conference presentations but we would also have the opportunity to meet other families and their affected children, some with the same strain of Mucolipidosis that our children have.
To attend the Conference we need help with finances. The cost of attending as well as airfares, accommodation and other costs will be approximately $3,000 per person. My family consist of my husband, myself and our daughters Tegan and Grace who have Mucolipidosis 2/3; our son Christian and daughter Caryl (neither of whom have ever met another child like their siblings), my daughter’s two sons who are currently in my custody and two carers who look after Grace one weekend a month. (My son Christian and the two carers are contributing some of their own money.)
I am in the process of seeking local support for our family to attend the Conference and would greatly appreciate if you would consider gifting us even a small amount of funding to assist us to attend.
Can you please help us get Grace and Zach together again?
Organizer
Sylvia Broekman Webb
Organizer
Howlong, NSW