Angelman syndrome: Mum does press ups to help her care for son

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Sarah’s daily routine involves doing press ups in order to care for her severely disabled son, Ivor, who has Angelman syndrome. The rare genetic condition affects his nervous system, causing severe physical and learning disabilities. As one of the 310,000 unpaid carers in Wales, Sarah faces challenges in ensuring proper care for her son. The Welsh government acknowledges the importance of providing support for parents like Sarah who require assistance.

Ivor’s condition necessitates constant supervision due to his inability to speak, understand commands, or use the toilet. Despite his challenges, Sarah describes Ivor as a happy child who enjoys cuddling, walking, and playing. However, as Ivor grows, Sarah recognizes the importance of maintaining her physical strength to continue caring for him effectively. With Angelman syndrome patients often requiring two strong carers, Sarah anticipates the need for additional assistance in the future.

In her journey as Ivor’s caregiver, Sarah emphasizes the importance of staying physically fit to assist him in his development. She also reflects on how her role as a solicitor has provided balance and prevented her from becoming overwhelmed by the challenges of caring for Ivor. Despite the difficulties she faces, Sarah remains determined to advocate for improved genetic testing to enable early diagnosis and access to essential therapies for children like Ivor.

The realities of unpaid caregiving extend beyond Sarah’s experience, with individuals like Hannah also facing significant challenges in caring for their loved ones. Hannah, a social care worker, cares for her daughter Darcy, who has multiple medical conditions and requires constant supervision. As unpaid carers navigate the complexities of their responsibilities, organizations like the Family Fund provide invaluable support to alleviate financial burdens and offer assistance to families in need

Read the full article from The BBC here: Read More

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