‼️Please read and share this post in order to raise as much awareness as possible about a cause that lies incredibly close to my heart. 

On the 3rd November I was diagnosed with an extremely rare genetic disease. This diagnosis followed after a long 3 years of hospital admissions (15 long admissions to be precise) each time I was becoming more unwell and would spend weeks sometimes even months in hospital with absolutely no answers or explanation as to what was wrong with me. To be honest this past 12 months I have spent more time in a hospital bed than I have in my own bed. My whole life has been on pause for the past 3 years; I have missed out on vital parts of my education, all aspects of my social life and more importantly simple things, the things we all take for granted like walking and mobilising became exceptionally difficult for me at times due to the severity of the disease.

 Most people believe the number 13 is unlucky however for me; it was on my 13th admission to hospital when I finally got diagnosed. The reason I wasn’t tested for this rare disease much sooner is unfortunately due to the funding. It saddened me so much to hear this because my family would have paid anything to make me better or make any kind of progress and we were never told sooner about this being a possibility simply  because it is so rare and the NHS don’t have the funds to facilitate the testing for it. After finally getting my diagnosis I was started almost immediately on a new and uncommon injection which I take everyday. Sadly again this treatment was not considered until I was extremely unwell; again due to the expense of the drug. 

All of my doctors have been absolutely fantastic and I myself and my family will be forever thankful for them and all that they have done for me over such a lengthy period, but at times they were completely baffled as to what was going on and how to treat me so, this nearly resulted in me having to be flown over to London to be under the care of other consultants. Unfortunately I was not well enough to go so they had to work together and fight for my new treatment and thankfully now almost 6 months down the line of being on my new drug and we have started to see little improvements every day! Aswell as this I have only been hospitalised twice since starting the treatment and both times the admissions were much shorter than all those previous. Proving I was not as sick and this injection has been and will continue to save my life. For the first time in years I can finally start to think about doing the thing I want to to- mainly to be strong and well enough to go back to school as my education is something I treasure very deeply and my school have been absolutely fantastic in supporting me through my long journey of ill health as well as my family and friends who I couldn’t do without.

There may be bumps along my road but we are confident that my treatment will give me a better quality of life and normality along with that.

In conclusion; I will be fundraising to raise money for a charity called Jeanesforgenes. This charity helps children and people like myself get diagnosed early on in their disease - which is absolutely crucial as I know what it was like to battle with no diagnosis for 3 full years. So the sooner it’s diagnosed and treated the better the outcome. Myself and my family will APPRECIATE every single donation and also more importantly please SHARE this post  as far as possible to raise much needed awareness across NI. ‼️‼️‼️the link to my JUSTGIVING page is belowMany thanks, Sophie Geraghty and family.❤️‍🩹

Individuals:

to support others in getting diagnosed with auto inflammatory genetic disorders

justgiving.com/campaign/j4gday2022individuals