FINDING out their child will have a short life sends a family into freefall. Jessie May is able to catch them to offer vital support in the family’s own home. This year’s Children’s Hospice Week (21st – 25th June) marks the start of the Jessie May Summer Appeal. An important time for us to share aspects of the crucial work we do.
One of the children Jessie May supports is 9-month-old Alessi. Alessi was born during the COVID Pandemic and was diagnosed with severe Cerebral Palsy after a complicated labour. Reagan, Alessi’s mum, relies on Jessie May.
“I’d had a straightforward pregnancy and was looking forward to welcoming a new bundle of joy to our family. But the labour was far from straightforward. Many things happened, but ultimately Alessi’s heartbeat stopped. Once she was here, we were told the news no Mum or Dad ever wants to hear: our daughter was unlikely to live for very long. In fact, they said they’d be surprised if she made it past the first day.
“9 months later, and Alessi needs round the clock care. She regularly has terrifying seizures and needs to be suctioned constantly and tube-fed. Me and Mitch – her dad, take turns to sleep so that someone is always with her. At the same time, it’s a constant struggle to get the support we need – emotionally, financially and practically.
“And after a year in and out of lockdown, with Alessi in and out of hospital, and cut off from our support networks – we feel pushed to our limits. Some days we don’t know how we can go any longer.
“There’s no one else in our family, bar Mitch and I, who can care for Alessi. No one can relieve us. Except for the Jessie May nurses, they are trained professionals, and I know Alessi is safe when she is with them.
“If I need someone, they’re there. They’re helping us rebuild from the trauma of Alessi’s birth and diagnosis, and without them, life would be very different. Me and my family are pushed to our limits every day. Jessie May can’t be pushed to theirs.”
More and more children are being diagnosed with serious illnesses – putting more and more pressure on hospice services like Jessie May. If they are to help every family like Alessi’s, they need the continued support of the general public and local businesses to do so. Support Jessie May this Children’s Hospice Week by making a donation or by pushing yourself to your limits and taking part in a fundraising challenge.
You can read the full story or make a donation on their website here: www.jessiemay.org.uk/pushed-to-the-limits.