$13,000AUD raised
Funding for Jade
Donation protected
Hi, Our names are Lee and Anton and we have two beautiful girls, aged 3 and 1. Our eldest daughter Jade was born with a rare chromosome condition known as Tetrasomy 18p. It causes a global delay and we have been on a roller coster ride ever since we got the diagnosis when she was 6 weeks old. There are less then 20 families in Australia with children with the condition and as far as we know we are the only family in Victoria.
Jade took much longer then a typical kid to reach many of her early milestones. She started crawling around 14 months and walking around 30 months. Her language and comprehension is delayed and she currently has a very small vocabulary and only uses 1 word phrases or guestures to communicate her needs.
Like any parents with a special needs kids this has definetly added some burdens financially for specialist appointments. These include regular Physio and OT appointments, specialist appointment with a behavioural paediatrician, and yearly monitoring for scoliosis with orthopaedics. Jade had eye surgery when she was 1.5 to correct a strabismus (eye squint) and it's looking like she may need another one within the next 6 months as the strabisimus seems to have returned.
Despite these issues we wouldn't change anything about her at all, she is the most amazing, tenacious and gorgeous girl. Jade is a spirited kid with a beautiful cheeky grin and an infectious personality. Anyone that meets her just loves her. We just want to provide her with every oppertunity to be the best person she can be. This means early intervention needs to continue now so she can reap the benefits later in life.
All the research for Jades condition is done in America by the Chromosome 18 registry and research society. Every four years they have a big conference in San Antonio where the research is done. We would love to take Jade to meet other children who are just like her and we think it will be invaluable for her confidence and self identity.
We have pushed forward for 3 years without asking for handouts but it seems the wind is running out of our sails and we are now desperate for funds. Our trip to American is being scaled back to the bare minimum as we really want Jade to meet her fellow tetrasomy 18 people.
We won't be able to express just how much this will mean to us. To anyone that considers donation - thank you - from the bottom of our hearts. And just know that you helped to make a special beautiful unique girl happy and ready to take on whatever the future may have in store for her.
Lee and Anton
For more information on the Chromosome 18 Registry & Research socity:
http://www.chromosome18.org/
Jade took much longer then a typical kid to reach many of her early milestones. She started crawling around 14 months and walking around 30 months. Her language and comprehension is delayed and she currently has a very small vocabulary and only uses 1 word phrases or guestures to communicate her needs.
Like any parents with a special needs kids this has definetly added some burdens financially for specialist appointments. These include regular Physio and OT appointments, specialist appointment with a behavioural paediatrician, and yearly monitoring for scoliosis with orthopaedics. Jade had eye surgery when she was 1.5 to correct a strabismus (eye squint) and it's looking like she may need another one within the next 6 months as the strabisimus seems to have returned.
Despite these issues we wouldn't change anything about her at all, she is the most amazing, tenacious and gorgeous girl. Jade is a spirited kid with a beautiful cheeky grin and an infectious personality. Anyone that meets her just loves her. We just want to provide her with every oppertunity to be the best person she can be. This means early intervention needs to continue now so she can reap the benefits later in life.
All the research for Jades condition is done in America by the Chromosome 18 registry and research society. Every four years they have a big conference in San Antonio where the research is done. We would love to take Jade to meet other children who are just like her and we think it will be invaluable for her confidence and self identity.
We have pushed forward for 3 years without asking for handouts but it seems the wind is running out of our sails and we are now desperate for funds. Our trip to American is being scaled back to the bare minimum as we really want Jade to meet her fellow tetrasomy 18 people.
We won't be able to express just how much this will mean to us. To anyone that considers donation - thank you - from the bottom of our hearts. And just know that you helped to make a special beautiful unique girl happy and ready to take on whatever the future may have in store for her.
Lee and Anton
For more information on the Chromosome 18 Registry & Research socity:
http://www.chromosome18.org/
Donations
Organizer
Lee van den Blink
Organizer
Braeside, VIC