A Little Night of Music for Anna

On Saturday 19th January, the Keighley family brought friends, family and their local community together to fundraise for Metabolic Support UK and to celebrate the life of Anna, their daughter, who very sadly died of GM1 Gangliosidosis, aged 1. They organised a classical concert music, which proved to be a huge success, as Sarah, Anna’s Mum, explains.

 

“On 14th July 1997, our daughter, Anna, was born. When she was only 3 months old, she was diagnosed with GM1 Gangliosidosis, a rare metabolic disease. At the time of diagnosis, we were told that this was incurable, and that Anna was unlikely to live beyond the age of 2. The course of the disease meant that Anna would lose the few developmental skills she had already attained; become quadriplegic; go deaf and blind; have fits and recurrent chest infections, to which she would eventually succumb.

 

With a bit of research, we came across Metabolic Support UK, who were there to support our family and give us a wealth of information on GM1. It was reassuring to speak to someone who knew instantly about the disease when everyone else we had spoken to seemed to know so very little.

 

We were initially devastated by the news that Anna was terminally ill but over the next few months, Anna’s condition and prognosis was something with which we came to terms. Although the changes were slow at first, Anna’s condition deteriorated noticeably after her first birthday. All the way through, it was our desire to nurse Anna at home, and we were supported to do this by all those involved in her care. In the middle of November 1998, Anna became unwell with a chest infection following several weeks of noticeable deterioration and sadly she died in our arms on 27th November 1998.

 

As the 20th anniversary has recently passed, we wanted, as a family, to celebrate her short life and raise money for Metabolic Support UK. We had the idea of hosting a concert at St Chads Church in Poulton-le-Fylde, Lancashire, entitled ‘Classical Mix.’ Our son, Matthew, who is a performance Masters student at The Royal College of Music in London and sings tenor, put the programme together along with his girlfriend, Hannah Johnstone, alto and post-graduate student at Trinity Laban Conservatoire in London. They were joined by friends, Lizzy Humphries (soprano), who sings regularly on Radio 3 & 4 and Theo Perry (baritone), also a post- graduate student at Trinity Laban. The programme consisted of solo and ensemble pieces from composers including Elgar, Parry, Mozart, Schubert and others.

The four vocalists

With tickets only sold on the door and not in advance, we didn’t know how many people to expect. The concert started at 7pm, and by 6:30pm I was worried that there wouldn’t be enough people for our vocalists to perform to. But by 6:45pm they were queuing down the church path! We were overwhelmed by the turnout, with a full church including the balcony. It was an amazing response.

 

The concert was a rip-roaring success both from the turnout and from the feedback given on the night and since the concert. With family and friends spread far and wide, we knew not all would be able to come. So, alongside the concert, we also ran a Just Giving page to provide an opportunity for some of them to contribute. This was a brilliant idea! We raised £660 through our Just Giving page alone! With the money raised on the night and other donations received, we have raised a staggering £3,018.22! As a family, we couldn’t be prouder of this achievement and all for a cause so close to our hearts.

 

The Keighley family.”

 

 

Thank you so much for all your support. Your donations will make a huge difference to the support we can give to families and patients with Inherited Metabolic Disorders.

We are also delighted that your event was such a success. It sounds like it was a truly beautiful tribute to Anna.

 

If the Keighley family have inspired you to fundraise, please get in touch with Maggie, our Marketing and Fundraising Officer, on margaret@metabolicsupportuk.org or 0845 241 2173 for some fundraising inspiration and to see how we can support you with your event.