Portsmouth High School’s Head Girl team were delighted to present a cheque for £13,248.13 to The Lily Foundation after an extensive year of fundraising.
The Head Girl team presented the cheque to Portsmouth High School alumna Millie Hunter, who suffered the tragic loss of her baby, Otto, from Mitochondrial disease.
Mitochondrial disease is a genetic condition that affects the function of the mitochondria inside our cells. Mitochondria are what produce 90% of the energy in our bodies so if you have Mitochondrial disease your cells aren’t able to produce enough energy which can lead to organ malfunction. It affects, mostly commonly, babies and young children.
The Lily Foundation was set up by Liz Curtis in 2007 in memory of her daughter, Lily, who passed away from the disease at 8 months old. The Foundation does essential work in supporting families of those affected by the disease and spreading awareness of the condition.
Millie Hunter, from the Class of 2013, was overwhelmed by the amount the sixth form had raised and said:
‘I am so honoured that Portsmouth High School chose The Lily Foundation as their charity, in memory of our beautiful son Otto. Thank you from the bottom of my heart for supporting their work. You’re all amazing, and I’ve never felt more proud to be a PHS girl.’
Currently there is no cure, but The Lily Foundation is working hard to change that. Important steps have been made to make the diagnosis faster, easier, and less evasive and promising research into effective treatments is underway. The Lily Foundation does essential work in supporting families of those affected by the disease, spreading awareness of the condition and providing the link between medical professional and patients.
Liz Curtis, from the Foundation, added: ‘What an incredible sum of money to raise. I know first hand how difficult raising money can be and how much work it takes. So congratulations to you all for your incredible efforts. £13,248 is just amazing and you should all be extremely proud of yourselves. Millie and her partner Tony have decided to dedicate their (and the school’s) fundraising efforts in memory of Otto towards diagnosis of mito and their reason for this is very personal to them. When Otto was diagnosed, the medical teams were able to give Millie and Tony a genetic diagnosis, meaning that they were able to detect the actual gene that had caused the disease in Otto. Whilst it didn’t change the outcome for Otto, sadly, it would make a huge difference to their future. A genetic diagnosis means that Millie and Tony are able to test future pregnancies to ensure that the unborn baby does not carry the disease, or are eligible for certain IVF techniques that can eliminate any risk of carrying a child with mito. We are thrilled to say they will shortly be welcoming Otto’s baby brother into the world.
‘When we set The Lily Foundation up in October 2007, my husband and I were told that it would be unlikely in our lifetime that we would ever find out the genetic cause of Lily’s mitochondrial disease. At the time, diagnostic methods were underfunded and very slow. Our first ever Lily funded project was a gene testing programme. This project collated all the known genes that cause mito and put them on one panel so that all those known genes could be tested in one lab in one go. However, every time they found a new disease causing gene, they had to make up a new panel. This slowed things down and it became expensive. But as science moves on, so does technology. Exome sequencing became a technology that completely revolutionised this area. This project was fast and accurate and could be adjusted as needed. The Lily Exome Sequencing Project was very successful and for those families who were recruited to the project we had a 70% success rate of diagnosis. This diagnostic technique was adopted by the NHS and now forms part of the NHS routine diagnostic pipeline. Therefore Lily has launched phase 2 of the diagnostic project – The Lily Precision Diagnostic Project and Millie and Tony are supporting this through fundraising. The aim of this project is to find genetic causes for those who are still waiting. The project is in its early stages but we believe that results are beginning to come through.
‘I hope this gives you some context to how important your fundraising is, and the difference it is making to real peoples lives.’
Katie, Head Girl added:
‘Choosing The Lily Foundation as our Charity to raise money for this year has been incredibly special to us as the Head Girl Team. Supporting Millie and keeping Otto’s legacy alive gave every fundraising event a deeper meaning, and knowing that our efforts have contributed to vital research and diagnostic projects is something we’ll never forget. It’s brought our school community together in such a powerful way, and we feel so proud to have played a part in raising awareness and supporting families affected by this disease.’
Kate, Deputy Head Girl for Charities further added:
‘We decided to fundraise for the Lily Foundation in Otto’s memory after Millie came in to talk to us about the effect which the disease has had on her life and how important the money fundraised by the Foundation could be. We are lucky enough to have had many opportunities over the past year to fundraise – including our Charity Week and Fashion Show, our attempt to run the Great South Run and many sweet sales! It has been so rewarding to be a part of fundraising as we know that all the money which we have raised is going to such a worthy cause, and we’re so grateful that we had the chance to keep Otto’s legacy alive.’
The Head Girl team spearheaded fundraising activities throughout the year to generate money and raise awareness of the charity. Charity Week has been running for over 30 years and is always organised entirely by the Sixth Form. The week is made up of talent shows, live music events, an annual netball match versus boys from Portsmouth Grammar School and other events. It culminated in a two night Fashion Show where the Sixth Form used their teamwork, leadership and choreography skills to put on a spectacular show.
Head of Sixth Form, Mrs Katie Wood, said:
‘Millie is the epitome of a PHS girl, as shown through her tremendous strength and courage. Our Head Girl Team were so proud to work with her to contribute to Otto’s Legacy through the wonderful work of the Lily Foundation and we, in turn are proud of our pupils for pouring so much energy, enthusiasm and effort into completing their campaign. This was truly a vibrant, successful and record-breaking year of fundraising.’
