A Necessary Evil…….

Blog Number 2…..

This blog is about something that I HAVE to do. It is a huge aspect of my life  and I want people to understand what I do and why and I also want to encourage more people to help me in some way. So here goes….

I don’t want to fundraise.

I didn’t want my child to be born with profound and multiple disabilities.

I don’t like posting to ask for help, in fact, I actively DISLIKE it. I cringe at myself when I click on the “Post” button.

I worry (a lot) about annoying people or boring them senseless. I worry that people hide me or delete me from Facebook.

And I get hurt when I see someone has “unliked” Blake’s Facebook page.

I shouldn’t, but I do. I can be a bit sensitive at times (okay, most of the time!) and I get hurt easily.

So now I have cleared that up, you will hopefully realise that this is not fun for me, but sadly, I have no choice. The fact of the matter is….I HAVE to fundraise.

I love my son. I want to help him and all the others. Please, take a minute to ask yourself this….What would you do if your child had been born with a rare, cruel and currently fatal condition? What would you do when you heard that the research looked so promising that there will undoubtedly be a cure? And what would you do when you realised that money was the only thing standing in the way? YOU WOULD FUNDRAISE!!!

Over the last 2+ years, we have organised many fundraisers. People have fallen in love with Blake and have taken him to their hearts. Friends, family and many strangers have helped, planned and organised fundraisers, some with my input, others, completely without! People want to help. I am truly humbled by everything that has been done so far. I have experienced human kindness that many people will never experience in their lifetime. I have met some wonderful people. I have been surprised, shocked and honoured.

I attended a workshop at the weekend for parents of children with Rett Syndrome and MeCP2 Duplication Syndrome. It was emotional, inspiring and motivating. We laughed, and we cried. We shared stories, feelings, tears, experiences and gave each other advice and opinions. It is incredibly touching, listening to other parents, hearing their individual stories and what their child goes through. I listened intently as a parent told his story and why he and his wife decided after 11 years that they wanted to start fundraising for treatments for their daughter. He stated that he loves her as she is, he doesn’t necessarily want to change her….but he has to ask himself….what would she want? Would she want to be playing outside with her friends, would she want to be spending her pocket money at the shopping centre on her holidays and weekends? What would she want to say to her parents? Another parent described finding a cure/treatment as “unlocking” her child. We all believe that our children are locked in their own bodies, unable to express themselves, show us their true potential.

So what did I get from this workshop? I became inspired again, motivated, determined. I was reminded that it is up to me, as Blake’s Mum, to help him, unlock him, fix him, cure him. Allow him to be what he wants to be. I learned about many ways of fundraising, not just asking for hard cash in the form of sponsorship.

I am using this blog as an appeal. I am begging (yes, begging!!) you to help. There is power in numbers. I urge you not to feel daunted because you feel unable to take on a massive task. I will go on to give you ideas of how to raise funds without running a marathon.

Blake is 3. He has many problems. I was lying with him the other day, and panic set in. I don’t want to lose him. I used to think I would be able to cope with losing him. But now I just cannot bear the thought of not having him. Life with Blake is all consuming, I can’t begin to imagine how life would be without him….such a massive gap would always be there, it would never heal. He is my wonderful little boy and I just want to help him. I want to take away the seizures, the chest infections, and I want to fix his beautiful, chubby little body to allow him to move.

Hopefully you are now asking yourself what you can do to help. If you’ve helped before, please consider helping again. There are endless possibilities and I will tell you about some of them, but I have so many ideas, some tried and tested, others yet to be carried out. If you want to chat further with me and get more ideas, please do not hesitate to contact me.

So, some fundraisers take  a lot of effort. Some, not so much. In 2013 to mark Blake’s 1st birthday, we organised a dinner dance. This raised £18,000. We were over the moon. However, it took months of planning and a lot of begging!!

We have had Cake Sales, pop-up charity shops, candle sales, psychic night, raffles, online auction, cheese and wine nights, baby sensory events, yuletide fayre, fashion show and many many other events.

Other ideas we have is to ask local businesses to make us their “Charity of the Month/Year”. Many businesses have a charity team and are actively looking for charities to support. This is something that anyone can think about. Who do you work for? Do they have a charity team? Could you ask them to consider supporting Reverse Rett? Schools…..they do charity work…..do you have a school age child? Do you work in a school? Maybe you could approach them. Kids love fundraising. In our local village, some of the children had a cake sale in their garden. They baked cakes, put them on a table in their front garden and sold them to passers by. Another local girl made little soaps and went around her neighbours and sold them for 50p each. Now, neither of these were massive money making ventures, but nevertheless, that is not important. They went to the effort, they helped, they wanted to do something, and they raised awareness. You never know who might hear about Blake and the research being done and then want to help. Many people just want to fundraise. Some don’t actually care which charity but they just want to do good.

Do you know someone with a business? Can they donate a service? Perhaps a carpenter who could make a garden bench? A pub owner could donate a meal? A mechanic could offer a free MOT etc. These things could be used in an online auction and as part of a bigger event. Perhaps business owners would happily take a collection box on their front desk.

And then there is the idea of regular donations. So many of us have been stopped on the street and before we know it we have agreed to donate £2 a month to saving a rare species, or supporting Great Ormond Street Hospital, or Oxfam. Could you afford to spare £2 a month to Reverse Rett? That’s 50p a week. I have approximately 1000 contacts on Facebook. If everyone donated £2 a month, that’s £24,000!!!! What an amazing, ongoing, guaranteed amount that is.

Sponsored events……some people love a challenge. Is there something you have always wanted to do? A bungee jump? A challenging cycle? Why not tick it off your bucket list and do it for Reverse Rett? I am more than happy to help you set up Just Giving pages, give you information etc, and the team at Reverse Rett are also extremely helpful and will provide you with all you need.

A coffee morning, afternoon tea, girlie night in….these are things that we would do anyway……why not turn it into a fundraisers. Charge £5 for the coffee and cakes, have a small raffle and before you know it you have raised anything from £50 to £300.

The bonus to fundraising is that it’s a win-win situation. Vital funds are raised for a great cause and you get to feel very good about yourself. It’s true…there is definitely a buzz to fundraising. Before I had Blake, I organised a dinner dance for 2 local girls who needed funds for an operation. I have to admit, I felt very proud of myself for raising £10,500 on my first proper event. It was hard work but worth every minute and even better to know that the surgery has been a wonderful success. I also know how much their parents appreciated it and that felt good. So please know, that ANYTHING you can do, big or small, is appreciated more than you will ever know.

So I will leave you there and hopefully I have managed to inspire at least one person with this blog. Feel free to share among your friends and contacts and please contact me if you want more information or ideas. My email address is jennymcmillan1@hotmail.com

Thanks for reading. Below are some links which may be of interest.

https://www.justgiving.com/hope-for-blake/

http://www.reverserett.org.uk/what-we-do/what-is-mecp2-duplication-syndrome/

http://www.401project.com/

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