“When Hayden came into our world, diagnosed with Cystic Fibrosis, our world soon filled with the reality of his life-limiting condition, nebulisers, physiotherapy and endless feeding. We moved from London to the Sussex countryside and were surprised to discover I was pregnant again. When COVID hit, I stopped commuting to work, taking early maternity leave.

Ella spent the first month of her life in hospital with suspected meningitis. Three months later she was diagnosed with infantile spasms (cause unknown) and after many hospital visits, was finally diagnosed with Aicardi Syndrome – a rare genetic neurological disorder. She’ll experience lifelong challenges with her disabilities, seizures and is non-mobile and completely dependent.

Living in a new rural home resembling a building site, during Lockdown, alone most of the week as my husband continued to commute, with two highly dependent young children was physically, mentally and financially challenging. The disability price tag 2023 (the extra costs faced by two people with disabilities in a family) is an average of £1,248 extra per month.

A few years on, trying to single-handedly balance work, hospital appointments, school, nursery, our finances and the home is such a challenge.

Earlier this year Hayden’s nursery mentioned Home-Start and from the outset Jo, my volunteer has been amazing. She helps me get jobs done, she plays with the kids whilst I shower. She enables me to leave the house and connect with others. She allows me to carve out a bit of time and space for myself and not feel guilty. She gives valuable advice, eases my loneliness and lets me offload. She’s our friend and Hayden cries when she leaves.

We haven’t celebrated Christmas in years, but with Jo’s help, I’m hopeful this year we may even get some decorations up. I can’t thank Jo and the Home-Start team enough. They are an absolute god send.”

Please donate whatever you can afford to the Home-Start Christmas Appeal today.

£25 will help Home-Start provide Christmas food, warm clothes, bedding and presents for local children. Their volunteers will give practical and emotional help – from advice on how to stay warm, sourcing foodbank vouchers and easing loneliness.

You can make an enormous difference to the lives of so many local families and children like mine this Christmas.

Please visit www.home-startawa.org.uk or call 01903 889707 to donate today.

Watch the Youtube video, here: