In connection with Rare Disorders Awareness Week, I was asked to write a short article for the Contact a Family Magazine, "Share an Idea", giving a parent's view of living with a child affected with a rare disorder. This is what I came up with!

A Parent's View One of the overriding feelings of a parent of a child with a rare condition is isolation. Friends, relatives and medical professionals are kind and supportive, but they cannot really understand what it is like: - to learn that your beautiful baby has a rare condition and to watch that child grow up and become aware of his condition and the implications of it. - to have to nurse him through his pain and suffering and to endure endless hospital appointments, x- rays, scans, operations and the worry of all the medication. - to have to explain the condition over and over again; to people you meet for the first time, from health professionals to people in the street. - to cope with all the added difficulties of schooling and education and to have to keep fighting for the very best opportunities for him. - to have constant nagging fears for his future It goes without saying that the strain on family life can seem intolerable at times. What we need is to be in touch people who do understand because they are living similar lives and through the work of our Support Group we have been able to achieve this. What we all desperately want is a treatment or cure for this condition, which although spontaneous in our son's case, is now hereditary for his offspring. The years are "flying by" and he is nearly a teenager already, so these hopes are becoming more urgent for us. In the meantime we live from day-to-day, keep positive and work hard to raise awareness of the condition. Helen Small Share an Idea, Summer 2001

Thank You!

A big thank you to all members who have sent donations to the Group recently.

Patsy Delaney and members of the Premier Dance Association raised £230 by holding a Majorette Dance Competition. Many thanks to everyone involved.

Cheques are very much appreciated as are other donations such as postage stamps, envelopes, paper etc.

Out and About with.

Our Newsletter Editor, Debi Roper, has been unable to put this issue together as her son is undergoing extensive surgery at present. In her absence we have put together this newsletter and we hope that Debi will be back in harness for the next one! It goes without saying that we wish Debi's son well and are thinking of her and the family.

Dawn is organising a big fund raising event for May 2002 for the HMESG. This is going to be in the form of a disco, with a performance from a live band, to be held in a nightclub in the Stevenage area. An exciting venture for the Group - more details when they become available. If anyone would like to be involved please give Dawn a ring on 01438 861473.

On 12 June 2001 Contact a Family launched a freephone helpline (0808 808 3555, 10 am - 4 pm Monday to Friday). This aims to put families in touch with local and national support groups or where there is no group, to try and link families directly. There are experienced Parent Advisers who are able to give medical information on most conditions affecting children and young people, as well as advice on services including provisions for special educational needs and entitlements to benefits which can be claimed. We wish them luck with this.

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