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Gracie’s story: Demelza has been a lifeline for us

Gracie and family

Gracie Hughes has a rare genetic disorder and loves her Zoom music therapy sessions with Demelza. For her family the support of the children’s hospice has been crucial this year, as Gracie’s mum Hannah has been in and out of hospital.

Nine-year-old Gracie loves music, dance and song and the pleasure the tunes bring her any time.

‘’A shaker and tambourine are her go-to instruments,’’ explains her dad, Paul.

From birth, Gracie has had an extremely rare genetic disorder, known as KM5B.  She has delayed development, epilepsy, a central processing disorder and is tube fed.  Gracie also struggles with senses, noises and textures – which is where Kent based children’s hospice Demelza’s music therapy classes have worked wonders.

‘’It’s just a lovely time,’’ says Paul, a 36-year-old policeman from Hoo near Rochester. ‘’Gracie will sit there for a full 45 minutes and be dancing and singing. It’s been amazing — especially during this difficult period.’’

The difficult time not only applies to Covid.  Gracie’s mum, 36-year-old Hannah, is struggling with her own rare genetic health disorder, which saw her confined to hospital for most of 2020.  Hannah is seriously ill with Ehlers-Danlos Syndrome which has led to numerous operations over the years. She has had sepsis many times and was in a coma in January.

‘’It’s been a horrific year.  Demelza has been a lifeline for us – especially through lockdown. Gracie’s a little dream.  She’s got a lot of challenges but she’s extremely strong, like her mum.’’

Expressing feelings is hard for a child with Gracie’s issues. But one-to-one music sessions have also helped her deal with the absence of Hannah. It enables her to communicate that she’s missing her mummy.

‘’The music therapy is a fantastic way to unlock the emotions inside her,’’ adds Paul. ‘’It is remarkable to see. It’s been so good. It is getting the emotions out of her.’’

‘’It’s quite hard for me to watch.’’

The Covid-19 pandemic has made Paul’s challenging life even harder.   The Kent police constable has had to reduce his work hours to care for his wife and child.

‘’So just having that extra support, and when things got bad — when Hannah was really poorly — I got on the phone to Demelza and they were so kind and just wanted to do as much as they possibly could, because they knew that I was struggling.

‘’I felt that I had another pair of hands guiding me and keeping me buoyant.  It just felt like I had a little bit of a safety net there, to be honest.  Having that sense of a bit of a family, as well.  They do look after you at Demelza.  When your back’s against the wall and you’re really struggling – that support is vital.’’

There are no limits to the support that families like Gracie’s need from children’s hospices like Demelza.

More and more families need the help of children’s hospices, and the hospices need your support to continue.

Help us ensure children’s hospices are not pushed to their limits by donating today.

Family stories