The Ultra Rare Diseases, DisoMissrders & Disabilities Foundation are a charity recently set up by six individuals from Northern Ireland who got together over a period of dedication to children with extra needs who are affected by rare disease.
Two of the foundation’s members has a grandchild with two rare blood diseases known as EBV HLH and XLP and to have a son with a rare genetic disorder, so both families know first hand how rare diseases,disorders & disabilities can affect children and their whole family circle.
Their aim is to be a center of support, advice & help. The future of the foundation includes a dedicated team of volunteers, counsellor’s & medical staff. Their aims are high and with the help of funding and sponsorship and fundraising they hope to buy a large house that they can turn into a home from home, a place where the parents can bring their children to and a place of sanctuary for patients with special needs, also a home where the whole family can go to for support and understanding and with your help they can make this happen.
One of the first things they want to achieve is a soft play cafe dedicated to children with special/extra needs & their parents. A place where they will all feel at ease instead of feeling different. These children deserve to have as much fun as possible and the foundation strives to make this dream a reality. Children who have special needs and learning disabilities have very few places they can go to and a place that meets their needs, and also be with other children who are just like them.
The foundation also knows how having a child who has a rare disease or who has just been diagnosed with a rare disease can put a family under enormous pressure this not only affects the parents but also affects the siblings in the family who become frightened and isolated due to parents attending hospital or having to stay in hospital for long periods of time sometimes schooling is affected and sometimes the family may have to move to another part of the country this can happen when there local hospital cannot treat the patient.
The need to have family counselling and child counselling is a vital part in the recovery period that follows a child being diagnosed with a rare disease and is a time when the family needs support of other families who have come through the nightmare and the ups and downs of having a child with a rare disease. The foundation see’s the need in helping all the family and it knows how vital this work is to keep the family unit together and to give them time to cope and deal with a diagnosis of a rare disease