On Sunday 1st July I'll be running 3.5km (yeah not the marathon!) with my 5yr old son who may leave me in his dust as he channels his favourite character, Sonic the Hedgehog. We'll be doing this in memory of my cousin's beautiful daughter Elsie.  She was born with an incredibly rare metabolic disorder called Krabbes Diease.  Unfortunately it's an incurable disease and five days short of her 1st birthday, at the beginning of November 2016, Elsie passed away. She joins her older sister Rosabelle who passed away, unexpectedly and unexplained, at just two days old in 2014.

Sparks are funding pioneering medical research in order to improve the lives of children and babies living with life limiting illnesses. They currently have an approved project for research into Krabbes disease. Watching my cousin and her husband, along with the rest of my family, deal with the past few years has been heartbreaking but also inspiring and I'd like to do something to help support the charities they are closest to.

Because I can't write this any better, below is my cousin's story written in her own words;

Elsie was born on Friday 13th November 2015, all was fine with the birth and Elsie was a very content baby until she got to about three months old. It was at this point that she didn't take her milk very well, everyone seemed to think it was colic and after a visit into hospital she was diagnosed with a milk allergy. The mucus and sickness continued and at the same time Elsie started jolting her body, her co-ordination was not great, she had very acute hearing and she stopped smiling which was strange. We had more hospital appointments because she was missing developmental milestones and her weight began to drop off as she really didn't like her milk and every feed was a struggle and took forever. After an EEG highlighted abnormalities, we were waiting for a MRI brain scan, it took weeks before we could get an appointment, and just three days before it was due to happen, in May last year, Elsie took a turn for the worse. We went into the Royal Alex Children's Hospital in Brighton, as Elsie had a very low temperature in the middle of the night and fearing infection she was put on drips and antibiotics and hourly observations 24 hours a day. The day of the MRI scan arrived but sadly Elsie was too poorly and weak to have a general anaesthetic, we needed a bed to become available at the Evelina London where they could do the MRI scan knowing that they have an intensive care unit on standby. The next day Elsie was transferred to the Neurology ward at the Evelina and very quickly had an MRI scan and within a couple of hours, we were informed that it did not look good and they would need to get a team together. The day after we had a meeting with a number of doctors as Elsie's diagnosis was really not very good to say the least. Elsie had a leukodystrophy but at this stage they did not know which one and they vary in how life limiting and progressive they are. Over the next few days more tests were conducted and it was identified that Elsie had lost her ability to suck, which explained why she struggled so much to take her milk and they were concerned she was not safe to swallow solid foods so she was given a NG feeding tube. A week later, a meeting was called at short notice where the doctors told us Elsie had Krabbes disease, a progressive illness where she would gradually lose all of her senses and in time lose the ability to swallow, we had already reached the point where here eyesight had deteriorated and she didn't open her eyes very much, and her mobility was already limited. Thankfully Elsie was deemed safe to eat her food for now but she was not expected to live beyond two years old.

We left hospital the next day as there is no treatment, it was the Friday of the second Bank Holiday weekend in May and we had only one plan. We were going to have as much fun as possible with little Elsie. We did this by firstly booking a two week holiday in Cornwall. It was on holiday that Elsie relaxed, started putting on lots of weight, she loved spag bol and cottage pie, and still disliked her formulae milk but at least it was now get into her tummy with her new tube. Over the next few months Elsie went on a further two holidays, went to her first hen party, two weddings, three first birthday parties and had many days out. She had her own friends and brought joy to all the family. She enjoyed the simple things in life; she loved the feeling of warm sunshine on her face, sounds of nature -especially the sound of the sea, floating on her back in water and a few stories before bedtime tucked up all cosy.

Elsie became ill on Sunday 6th November and after a visit to the doctors the next day where she was given antibiotics for a chest infection we booked a follow up appointment for the following day. We cuddled Elsie for a lot of the night and whilst laying on our bed, having just been put down, she had a cough and that was to be her last breath. She lost her brave fight in mummy and daddy's bed, where she felt safe and loved, on Tuesday 8th November, five days short of her first birthday. She joins her older sister Rosabelle who passed away, unexpectedly and unexplained, at just two days old in 2014.

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