Kace’s is 6 years old, I am his cousin Sophie raising funds to help support his parents who are losing income so Kace can get treatment to improve quality of life with his family - Sia (8), Mina (4), Mum Averill & Dad Leighton. Kace has a rare (1 in 150,000) genetic disorder called Hunter syndrome - Mucopolysaccharidosis type II (MPS II). It affects many parts of the body including skeleton, heart, lungs, liver, brain and is a progressively debilitating disorder, with reduced lifespan to average age of 10-20 yrs. His treatment involves 2-4 months in hospital for chemotherapy and a bone marrow transplant to help slow deterioration. A bone marrow donor has been identified in Spain, so chemo treatment is now fast-tracked to start 28th August. His sister Sia also has a totally unrelated rare (1 in 10,000) genetic mutation called Rett syndrome. Sia is non-verbal and non-mobile. Retts a severe condition of the nervous system causing progressive loss of motor skills affecting all body movement and language, also with a shortened lifespan averaging 24 yrs. Kace’s little sister Mina is a bright, friendly, caring 4-year-old who will be starting school next year. She is very supportive of her big sister Sia, and is just learning that Kace has to spend some time in hospital. Averill is a stay at home Mum and full-time carer of Sia who has high special needs. Leighton is a hard-working Dad, and brings in the sole wage as an Installer in Brisbane, Australia. Their odds of having 2 children with non-related, very rare, degenerative disorders are inconceivable and heartbreaking. There is no effective treatment for Sia. And now to buy back health and time with Kace, Leighton must take leave without pay from work for 2-4 months to stay with him in hospital while he receives treatment. During this time the young family will have little to no income. It’s hoped the transplant will slow progression of symptoms, so Kace can enjoy his schooling years, and hopefully young adult life and decades beyond. We are kindly asking for your help. Any contributions will be greatly appreciated, and directly support the family while Kace and his Dad are in hospital. If you can’t give, would you please consider sharing this page so that it may reach more people. If you can give, your support means a lot to us and we thank you so much. Use of funds: $13,500 two months income replacement for Leighton to stay in hospital with Kace on leave with no pay. $ 1,500 hospital car parking, travel, & miscellaneous medical costs $ 2,000 weekly post-transplant hospital visits for up to 12 months $13,500 possibly up to extra 2 months in hospital depending on Kace’s recovery, complications & setbacks. The funds will go towards this and supports to ensure Kace has quality of life. Funds will be paid to Kace’s parents. *Community of Kace’s school, please use discretion. Kace will be attending school up until his treatment begins. We’d prefer it not discussed with children, so he can continue enjoying time with friends, care-free. #KourageousKace #TransplantforKace
Artículos relacionados
