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Jenna Hall avatar
Jenna Hall

In memory of butterfly boy, Oisin. Supporting research into DIPG tumours.

Running 150km between 28/6 and 20/12 for The Lyla Nsouli Foundation because not enough is known about DIPG tumours.

496 %
£1,241.93
raised of £250 target
by 54 supporters
Donate

The Lyla Nsouli Foundation

We fund medical research to work towards a cure for DIPG

Charity Registration No. 1145172

Story

On Sunday, the 18th of January 2015, a beautiful little butterfly boy, Oisin, got his wings, aged 3yrs 11months.  Oisin was diagnosed with a DIPG tumour in September 2014. 

Sheila and Barry, Oisin's parents, my friends, have demonstrated such courage, strength, honesty and selflessness over the past 9 months. Through their blog (https://butterflyboyoisin.wordpress.com/oisins-story/) they seek to support others and raise awareness of DIPG tumours and the urgent need for more high quality research into the causes, treatments and possible prevention. 

As a result, I have committed to participating in a series of challenges over the coming six months to raise much needed funds for research into DIPG tumours. I will complete a series of 'races', ranging from 5km to a full marathon (42km). In total I will cover 150km. One of the very first events I will participate in is a silent walk in memory of, Oisin. On the 28th June a number of these walks will be taking place across Ireland and the UK. 

In their blog, Sheila and Barry describe Oisin's final day: 'He gave us a beautiful final day... His humour still present, he put up his right hand and managed to wave at the cars as they passed. The small movement in his right hand was about the only bit of mobility he had left, and he used it to its fullest...he used his finger again to request one of [granny's] delicious marshmallow biscuits. We gave him a taste on his lips. It must have been magical for him, as by now he was unable to eat and swallow much more than a few drops full of pureed food and water...
 The sinking feeling in my heart told me we had arrived at our final night together. Like every night before, we all kissed him and cuddled him. We told him how brave he was and we told him that we loved him... He died very peacefully between us both, his mummy and daddy, in the big bed. He simply stopped breathing in his sleep, very quietly. It was 1.55 in the morning. Daddy put a hand on his heart, looked at me, and shook his head, “he’s gone.” Words I never wanted to hear. I wept for my loss.'

Please donate to support the Lyla Nsouli Foundation to fund vital research into DIPG tumours, and in turn help fewer families to face the devastation and anguish that Sheila, Barry, Cillian and their wider family and friends have. Thank you. 

PS two things. 1) I have paid all entry fees for these events, so there is no cost to the charity / they are not paying for my places. 2) You may know that I have run/jogged on and off for years, and may think this is not a huge personal challenge; it will be. I've never run this number of formal events in such a condensed period of time. One or two a year is my typical max! Knowing that the money raised will help others will be enough to spur my training on, even on the those days I'm really struggling to get out. Thank you for your support.

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