Help for my Kids - DeafBlind Children

I need donations to help me travel to Boston, USA in July for 4 days to attend the Usher Syndrome Conference and International Symposium and I would love your help. This is in support of my 2 children , Christian and Georgia Parnemann who are suffering from this very rare and cruel condition called Usher Syndrome. All the top eye specialists and scientists in this field from around the world will be in attendance and I am very excited at the prospect to learn more about their condition to assist my children day to day with their extra challenges. They were born profoundly deaf and also had delays with their gross motor development and have issues with balance still to this day. We never had a diagnosis until recently once my son was old enough to take an extensive eye test and have genetic testing. We had previously exhausted all other known conditions. We have a third child, our youngest whom is free of this condition as it was a one in four chance of us passing it on to our children, The condition is so rare due to the fact that both parents need to have the recessive gene. They both have a progressive eye condition called Retinitis Pigmentosa. Initially children develop nightblindness which they are already experiencing, followed by a narrowing of the visual field , commonly known as "tunnel vision" leading eventually to complete blindness. Most individuals with Usher Syndrome are legally blind by the time they are adults. Christian and Georgia are challenged everyday but continue to do so well with their cochlear implants to help them to hear. They have gone through extensive therapy to assist them to hear and have attended speech therapy through the ever amazing Hear and Say Centre twice a week for almost 7 years. Now we face our next hurdle in gaining all the help and experience we can to deal with this new diagnosis. Please share on your page with your friends to help spread my message. Thanking you all in advance for your help in raising awareness of this cruel condition.
  • Krupa Klan 
    • $500 
    • 84 mos
  • Michelle Cooke 
    • $30 
    • 86 mos
  • Anonymous 
    • $100 
    • 86 mos
  • Anonymous 
    • $20 
    • 86 mos
  • Ossie &Mary Moore 
    • $50 
    • 86 mos
See all

Organizer

Sandra Oliver 
Organizer
Clear Island Waters QLD
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