By Dawn | Family Support Worker
Michelle lives on the Isle of Wight. She is a single parent of two adopted children. Evan was adopted at just one week old. During the next seven months he was diagnosed by several doctors as suffering from severe colic. When the colic didn’t clear up, it was decided that he should have an MRI scan which showed that he was missing 80% of his brain tissue. It is suspected that he had a stroke while in his mother’s womb, which caused his brain to stop developing.
Evan is now four years old. He is completely immobile and totally dependent on Michelle. Michelle has been caring for Evan all this time without any support. Her home isn’t big enough to accommodate the hoists that Evan needs now that he is growing. She faces having to sell it and find suitable rented accommodation instead. Her local nursery nurses have offered some support but Michelle doesn’t feel comfortable leaving Evan with them. Evan also has a three-year-old sister, Emy, who misses out on play times and special time with Mum because she can’t leave Evan unattended.
I take Michelle and Emy to a local parent and child group and give morning support, twice fortnightly, to care for Evan so that Michelle can take some time out for herself. She is studying to become a massage therapist so that she can work from home to support herself while caring for Evan. It’s a big help for her to be able to study without having to worry about Evan for a while.
I also arranged a family stay at a hospice on the mainland so they had extra support and respite for a few days. As a single parent, Michelle told me the other day, “It has been lovely having someone to talk to, an impartial ear to unload upon and she has helped me to see the positive side of a respite stay at a hospice, not just for Evan but the whole family.”
Rainbow Trust will continue to support Michelle, Emy and Evan for as long as they need us. It isn’t clear what age Evan may live to, but our support will continue beyond, if necessary, and I will give them the chance to enjoy every single day together in the meantime.
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