Leila and the Swimrun

Grace is Aunt to Leila, our No Time To Lose star, and this year she took on the absolutely monumentous Breca Coniston Swimrun in order to raise money for Sparks. This is her inspirational story...

When my niece Leila was about 18 months old she was doing really well.

She was hitting all her milestones, a great walker, steady on her feet and her speech was coming along swimmingly. Everything for my sister Georgina, her husband Michael and their little family (George, Michael, Leila, bump and two dogs) seemed to be coming along nicely, which was wonderful, because Leila had been a much longed for baby that had taken a long time coming. Two years of trying, a miscarriage and a round of IVF hadn’t been easy on George and Michael but it was all worth it in the end.

When Leila was 19 months old, they noticed that her eyes would flicker sometimes. George had spoken to the health visitor, who had referred Leila to an optician. Then suddenly one day she couldn’t walk properly. It was almost like she was drunk. She kept falling over and was walking around the room holding on to things. George took her to the doctors who thought maybe she had an inner ear infection or vertigo but advised Georgina to take her to the hospital.

The next day Leila was diagnosed with OMS (opsoclonus myoclonus syndrome or DES – dancing eyes syndrome), a neurological syndrome that causes rapid eye movements, loss of balance, shaky, jerking movements of the face, eyelids, limbs, head and trunk that make it difficult for the sufferer to feed themselves or walk, sleep disturbance, lack of coordination, rage attacks and difficulty speaking. It is thought to be an autoimmune disorder in which the immune system attacks the cerebellum and is triggered by a virus or tumour. Leila was also found to have a rare form of cancer called a neuroblastoma.

That first year was very difficult for them as a family. Michael was self employed and had to take a lot of time off due to Leila’s treatment. She was put on steroids immediately for the OMS. She had surgery to remove as much of the large tumour in her abdomen as possible and then six rounds of chemo to try and shrink what was remaining. This didn’t get rid of it completely, but it did shrink it to a level at which the consultants were hopeful that as she grew her body would get rid of it. This so far hasn’t happened.

After three rounds of chemo Leila became too low in white blood cells and her immune system was so low she became very ill and spent most of Christmas in hospital. At this point she began another treatment called an IVIG. This was given intravenously the day after the chemo in the hope it would boost her immune system. Leila’s been on this every four weeks now for two years. She’s also had another two rounds of chemo since then to try and relieve some of the symptoms of the OMS.

Every time Leila has the IVIG she gets drug induced aceptic meningitis. She spends the next week screaming that her head hurts and is often sick. The steroids that she was on for 14 months made her depressed. She now is 18 months behind with her speech and language and has to have physio and speech and language therapy. The OMS attacks the cerebellum and George has been told that is has basically halted her cognitive development so she has plateaued developmentally at not much more than the age she was when she was diagnosed.

I live a two hour drive from my sister. I’ve always tried to be there for her as much as I could, but living so far apart it’s very difficult to provide practical help. With two toddlers less than two years apart, one with a rare disease, practical help is what they really need as a family. It is extremely frustrating to know that someone you love is suffering and that you are completely unable to do anything about it.

I have two daughters, also two years apart but older than Leila and her sister Esme. I have watched my sister George and Michael go through hell the last two years and I just don’t know how they cope on a day to day basis. They are the most amazingly strong, resilient people I have ever met, but the stress they must be under is immense. I just want George and Michael, Leila and Esme to have a chance to have the ‘normal’ life myself, and most other people know. I want them to have what everyone else has. What we all take for granted. To not have constant hospital visits and worry what the treatment is going to do to Leila this time. Will she be ok? Or will she be sick for days and then back to having seizures and never sleeping. Not being able to feed herself properly, or having loads of accidents because she’s so unstable, and being upset and frustrated herself because she can’t control it.

We knew that whatever we did it had to be something epic.

My friend Nicola and I had been trying to think of a challenge we could do to raise money for a charity that a friend of ours had started. Then Leila became involved with Sparks. I had to include Sparks in our fundraising because to me, finding a cure for this debilitating disease, and hopefully ending all this suffering, not only for Leila, but also future generations of children and their families who may suffer from these rare conditions, is the most important thing we could do.

We had both completed a marathon for charity before and so we knew that whatever we did it had to be something epic. It had to be a huge challenge if we were to ask all those people to give us their hard earned cash again. I found just the thing. The Breca Coniston Swimrun sprint is a 21km race (18km running 3km swimming) through the lake district, across three lakes, up and down the fells in October. There are no transitions like in a triathlon, where you change from your running gear into your wetsuit and back, you have to wear everything you’re planning on running and swimming in. You swim in your trainers and run in your wetsuit and just keep going until you reach the finish.

We only had nine weeks to train. We’re both 40 with two primary aged children and we work (Nicola full time, me four days a week). Squeezing in enough training was going to be hard enough, not even taking into account the fact that Nicola couldn’t do front crawl (or even put her head in the water) when we started. We spent a fortune on trainers that drain quickly, wetsuits, pull buoys, finger paddles so we could still swim when our hands were freezing. We spent at least a couple of evenings a week until it got too dark, open water swimming at the lake near where we live. I was up at 5.30am to go running in the mornings at least three times a week because it was the only time I could fit it in.

Weekends we spent at the lake running up hills in our wetsuits and jumping in the lake to swim afterwards, repeat, repeat, repeat, from 7am on Sat or Sun morning, rain wind or shine. 10 / 12 / 15km. It was relentless.

Three weeks before the event I tore my rotator cuff (the muscles that support the shoulder, very important for swimming!) and I couldn’t raise my arm more than halfway. I was advised not to swim until the day by an osteopath I saw in desperation. The week before the event, being unable to swim, and panicking slightly, I decided to up my hill training instead. That day the sciatica I’d got when I completed the marathon 18 months previously came back. My middle-aged body was revolting on me!

The Breca Coniston Sprint was the hardest thing I’ve ever done but it was all worth it.

We drove 6 hours to the lake district and the morning of the event sitting on the bus to the start, I was feeling extremely nervous. We both were. It was cold. The water was freezing. I was very worried that I wouldn’t be able to finish and would let down Leila and all the people who’d supported us.

The Breca Coniston Sprint was the hardest thing I’ve ever done. It was beautiful, rugged and uncompromising. The lakes were huge and absolutely freezing!!!! By the end of the last 800m swim across Grasmere I couldn’t feel my hands or my face and couldn’t actually speak (Nicola was probably quite grateful for that, I think she was feeling quite traumatized by that point) and we were both quite emotional as we knew we only had 1.6miles to the finish. We both cried most of the way but managed to mostly pull ourselves together before we saw anyone thank goodness! I cannot even describe the incline on some of the fells, over 1600m elevation! I don’t know how anyone could train for that. I was sick for a week afterwards, but it was all worth it!

It was Leila’s 4th birthday two days after we completed it and what an amazing birthday present. We’ve raised over £1000 so far for Sparks to fund research into a treatment that might change her life, and all the other children that suffer from a rare disease. Every bit of pain was worth it!

If you'd like to donate to Grace and Nicola's JustGiving page, please click here.

You can read Leila's full story here.

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