Our names are Lisa and Tony and we’re Lily-Mae’s mum and dad.
When we first found out we were having Lily-Mae, we were so excited for the world of possibilities having a baby brings: her first words, first steps, first day at school, graduation… the list is endless. But Lily-Mae was born 3 months early, having suffered an umbilical cord prolapse and although we love our daughter beyond measure, life with a severely disabled child is very different to those dreams we had.
From the day she was born we were told to prepare for the worst. She suffered with a swelling on her brain and spent 70 days and nights in intensive care.
Lily-Mae was diagnosed with Periventricular Leucomalacia, an extremely rare condition that caused small areas of her brain to die off, leaving holes. Essentially she has brain damage. Lily-Mae also suffers from a type of cerebral palsy as well as West Sydrome which causes spasms, neurological abnormalities and learning difficulties.
All of these conditions mean that Lily-Mae can’t see, walk or talk – though that doesn’t mean she doesn’t communicate with us. She loves to laugh and once laughed so hard when someone sneezed that the whole café got the giggles!
Lily-Mae was 6 years old before we found somewhere we felt comfortable to leave her for the night, knowing that she would receive the specialist care that she needs. It was a really important day for us, not only in that we had found the support we so desperately needed, but also because we were able to celebrate our 20th wedding anniversary together as a couple. And Lily-Mae had a whale of a time at Andy’s too!
Lily-Mae has so much joy and the staff at Andy’s really bring out the fun in her. She definitely picks up on the vibe when it’s time to play and be silly. Lily-Mae’s favourite things are crinkly paper, music and going to the hairdresser at Andy’s – what girl doesn’t like to feel pampered?! Another of her favourite things is the outdoor play area there – it has swings and roundabouts and other things that most kids take for granted, but for a child in a wheelchair are so hard to find. Those are really special days when Lily-Mae gets to play in a ‘normal’ way and experience the wonders of childhood like this, we call them her ‘golden moments’.
Our whole family will treasure times like these forever, and we feel very lucky to have been blessed with such a happy, kind and special little girl. Of course life is different to how we imagined – it’s definitely harder – and that’s why spending time at Andy’s is such a welcome comfort.
It’s really difficult to explain the impact that Andy’s has had on our life together. They’re our support group when life is stressful and frustrating, they’re our comfort when we’re uncertain and they give us the time we need to pick ourselves back up, rebuild and carry on.
It only costs £24 to give a child like Lily-Mae an hour of nursing time. That time gives us the opportunity to experience magical moments and build memories that will last a lifetime.
That’s exactly what Andy’s does: they give us these moments that count. Because when your child is seriously or terminally ill, Andy’s make sure they get it right for every child, every time.