By Jenny | Rian's mum
The last few years have been very difficult for my family. My son Rian was diagnosed with Menkes Syndrome, which affects copper levels in the body. I was five weeks’ pregnant when he was diagnosed, and my husband Michael and I were living in Australia, all the way across the world from our families in the UK.
The doctors didn’t think Rian would survive for long after birth so Michael and I decided to return home. But amazingly, Rian survived those first critical months. However, by the time he was three and Lauren, his little sister, was two, I was at the end of my tether. Rian was still receiving regular treatment and coping with both children at all the hospital appointments and admissions was so stressful.
Then I was put in touch with Rainbow Trust and Lyn, their Family Support Worker, came into our lives. She has made such a difference to the whole family and especially Lauren. With Lyn’s support, Lauren can now have some fun and go on outings and playdates like any other little girl and doesn’t have to come along to Rian’s frequent hospital appointments.
Lyn has given Lauren the chance of a normal life, which takes away a big worry for me. She also supports Kian, our third child, who has always known her as part of the family. Without Lyn and the support of the Rainbow Trust, I don’t think we could have survived.
A Family Support Worker can support up to 25 families, representing around 150 individual family members, so by helping to fund just one more Family Support Worker, you could make a huge difference to a great many people. Please consider this very worthwhile cause which can help family life to survive in sometimes almost impossible circumstances.
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