Help Ari and his parents get to Baltimore, USA
Help Ari and his parents get to Baltimore, USA for the 2019 Costello Syndrome Conference.Auckland
Ari is a very smiley and happy wee boy who will be 1 year old in June. He was diagnosed with a very rare genetic disorder called Costello Syndrome at around three months old. This condition means Ari has had many challenges already within his first year of life and he will continue to have many more as time goes on.
We are Ari's parents Giverny and Oren Svensson and we are fundraising to get to Baltimore, USA next year for the next Costello Syndrome conference from July 31st – 4th August, which is held every two years. This conference would provide us with so much insight and information from the expert specialists who attend and give lectures on different aspects of Costello Syndrome and the things we should expect for Ari’s future. We are also excited about being able to meet in person all the amazing Costello families we have met over facebook.
These are some of the things Ari has experienced so far:
- Born 6 weeks premature
- Failure to thrive
- Nasogastric feeding tube
- Hyperinsulinism / Hypoglycemia
- Heart condition
- Sleep apnea
- Slow weight gain
- Delayed development
- Low muscle tone
- 3-4 monthly abdomen ultrasounds for cancer
These are a few of the things Ari is likely to face in the future:
- Orthopaedic/skeletal problems
- Struggle to walk, talk and feed himself
- Delays and impaired learning
- Surgery for a Mic-key button (gastrostomy feeding tube) hopefully by this August.
The money we raise from fundraising will go towards paying for our flights, accommodation while in Baltimore, food, transport & fuel, travel insurance, conference costs and shipping medical supplies in advance.
This trip would mean the world to us and provide us with so much information about Costello Syndrome. It would also mean we would be able to visit Ari’s Aunty, Uncle and cousins he has not met yet as they live only 6 hours drive from Baltimore in West Virginia.
We appreciate any donations we get and thank you very much for helping us reach our goal!
Also, for those interested in learning a bit more about Costello Syndrome then check out these links:
Use of funds
Funds will be spend on: flights, accommodation, food, rental car & fuel, conference fees, travel insurance and shipping medical supplies in advance. Any extra money raised will go to helping Ari's grandparents go as well for support.
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This page was created on 16 May 2018 and closed on 1 Jul 2019.