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I’m going to be running the Edinburgh Marathon For Mastocytosis UK, as many of you will know Ralph has been diagnosed with Diffuse Cutaneous Mastocytosis with possible systemic involvement 

Mastocytosis is a build up of Mast cells which are immune cells that can be triggered by things in the environment such as foods, airborne chemicals like cleaners and scented products, temperature changes, exercise and insect stings.  When triggered, they release lots of chemical messengers and travel around the body causing a range of really challenging symptoms.  Mast cells can cause full body system reactions (known as anaphylaxis) when the blood pressure can drop dangerously and the throat can swell.  Anaphylaxis can be life threatening.  Mast cells also commonly cause gastrointestinal symptoms, like tummy pain, vomiting and diarrhoea, and skin symptoms like rashes, itching and blistering.    

With Ralph having Diffuse Cutaneous Mastocytosis this affects Ralph as mentioned above but all over his body he has blisters that come up all over his skin and his head, his hands and feet go purple and he has flares which cause him great frustration and pain his face, arms and legs will go red and hot reaching his highest temp so far of 40.2. Ralph can and does react to anything and it is most of the time instant apart from his anaphylactic reaction he had in November 21. Ralph has in his 8 months of life spent his fair share in and out of hospital for stays and appointments

With all of this Ralph is currently taking 7 medicines a day some being 4x a day and still with these he gets blisters, lumps, a continuous itch and flares he has another medicine for bad days and then epi pens for an emergency but his drs say frequently we are not in control. Ralph has monthly ultra sounds to check his spleen growth as currently it’s enlarged, he has monthly bloods to check his tryptase levels and full blood count and countless appointments with his main Doctors at Leeds  who we have to say are absolutely amazing and are working tirelessly to help us which we appreciate massively and are always there when Ralph or us are having a bad day. Ralph is also receiving support from Great Ormond Street to assist with the development of this disease.

Living with a mast cell disease can feel like living in a minefield, because so many “normal” things, like foods, or washing powder or a hot day can cause misery.  Staying safe by avoiding these triggers can make some people with mast cell diseases feel quite isolated.   It can be difficult to diagnose these conditions because they are so rare (so doctors may not have seen patients with them before)

The UK Mastocytosis Support Group works to promote the well-being of people with Mast Cell Disorders (MCDs) including Mastocytosis, Mast Cell Activation Syndromes and Hereditary Alpha Tryptasaemia.  They educate people with MCDs, their families, and medical professionals about these conditions by sharing best practices in medical and self-care. They advocate for the needs of patients and their families within the healthcare system, promoting access to knowledgeable care and working to ensure access to medications.  They catalyse research by collecting key data from our community, connecting researchers and patients, facilitating communication between clinicians and researchers, and providing seed funding for investigators. 

Without this Charity as a parent of a child with Mastocytosis there is no one else out there to support, Charlotte, Jess and others in this support group have really helped us when we have felt lonely and struggling with everything Ralph and we are faced with.  

I’m running this for Mastocytosis UK to help with their funds but also massively to raise awareness of this disease which goes unnoticed and I’m sure in many cases undiagnosed we had a very long and worried journey to diagnosis and a lot of false diagnosis’s 

If anyone can spare anything or just simply share our story that would be absolutely amazing and so appreciated from us and the charity.

Also if anyone would like to know any more information about Ralph and his Disease then please don’t hesitate to get in touch

We have enclosed so pictures to tell Ralphs story better in the Gallery these are for educational purposes not to upset

Thank you so much from the bottom of our hearts

Justin, Beth and Ralph xxx