Raising Awareness for World FSHD Day with Orange Sliced Smiles

Tomorrow is World FSHD Day. FSHD (Facioscapulohumeral muscular dystrophy) is a chronic and progressive illness I had never heard of until Martyn from Inside Martyns Thoughts started blogging about it over the years. Now FSHD is a part of my life because quite wonderfully, Martyn is now a part of mine.

When I first met Martyn I didn't notice anything different about him. He was sat in his car and then I realised his car had been specially adapted so he didn't have to use his feet to accelerate or break. When we arrived at our hotel Martyn got out of his car, he walked around and I saw how he had to stand, move, sit and I got an insight into how disability un-friendly the outside world can be - slopes, lose stones, pebbles - nightmare!

I wasn't shocked by Martyns' disability; it doesn't bother me. Do I need to adjust to some things? Of course! We both know that's to be expected but it's not a problem. One thing I do know is that FSHD is a cruel and progressive illness and it's hard to watch someone you care about very much be in constant pain, stared at and limited. I haven't seen the full extent of FSHD but I know I will. Please have a read of Martyn's posts about his Muscular Dystrophy:

My Muscular Dystrophy

I'm Scared it Might be Time

My Son is My Hero!

Pain

Trapped Inside a Broken Body

I'm Proud to be Sabled

Here are some facts about FSHD:

• Between 2,000-2,500 people in the UK have FSHD. Several generations of a family are often affected by the condition.  It can be diagnosed at any age and can vary widely between individuals, even within the same family. One-third of those with the condition are unaware of the symptoms right into old age.
• The earlier the muscle weakness appears, the more severe it is likely to become. Between 10-20 percent of people with the condition eventually require a wheelchair. It affects the muscles of the eyes and mouth, including the ability to smile.
• FSHD is caused by a genetic mutation which causes a toxic protein to be produced in the muscle, killing the muscle cells. There is currently no treatment available targeting the underlying genetic causes of FSH. Muscular Dystrophy UK is funding research investigating the mechanisms leading to FSHD.

To help raise awareness I'm joining in with The FSH Society's #WorldFSHDDAY and sharing some orange slice smiles! Orange is the Muscular Dystrophy colour and Martyn and I would LOVE to see your sliced orange smiles on all social media platforms. Please don't forget to use the tag #WorldFSHDDay so we can find and share your fantastic photos too and thank you for your support. Don't forget to get friends and family involved too!

If you wish to read more on FSHD, get help for a loved one or donate, then please check out the links below:

The FSH Society (US)

Muscular Dystrophy UK

NHS Choices

Donating pages

The FSH Society (US)

Muscular Dystrophy UK

Thank you so much for your support!

Race for Life 2016 ~ In Loving Memory of Anne

I was going to write this post soon after I finished the race on Sunday, 10th July but I never got around to it. I wanted to do the Race for Life this year as I didn't participate the year before. What spurred me on was learning a friends mum, an extremely close friend's mum, was undergoing treatment for the third time for cancer. As the time drew nearer it wasn't long before we all knew that she just wasn't going to win this round. I wanted her to know that I cared, that I loved her family like it was my own, so together myself and my own Mum made sure we raised funds and completed our race for life. Anne was on my mind the days leading up to the event and whilst tied to one of my mum's legs, hobbling around with an aching muscle and bruised ankle, it was Anne and my friend that kept me going. 

Below are some photos I took of this race event which was in Truro like it is every year. There were nearly 900 people taking part and many, many supporters cheering us all on. This post, much like my race, is dedicated to Anne, Mother of an extremely close and wonderful friend not just to me but to many. A lady who I know did a lot of good and leaves behind a wonderful man and many grandchildren but who led a full life and fought to the end. May you rest peacefully Anne and enjoy the view from upstairs 

xxxx

 My back sign

 Everybody getting ready for the warm up. So many people there again this year.

 Dad presenting mum with her medal after the race.

 Mum and I before the start of the race

 If you'd like to sponsor us for taking part this year and help us reach the £200 we're so very close to, you can do so below, A huge thank you to all those who have sponsored us both before and after the event. Also a huge thank you to the lovely ladies who sent happy mail to Anne. I know it meant a lot to her and it also meant a lot to her family too. Thank you x

Our Just Giving Page

My Sunday Photo ~ Rest in Peace

I did not know Aylan or Galip or Rehan Kurdi. I don't know any of the people fleeing their counties, risking their lives for a better one. That doesn't have to stop me from caring, from feeling helpless, or scared for them. Even when they make their long, exhausting and dangerous journey they still haven't reached the end, there is still so far to go. This candle is for all the very, very many men, women, children and babies who have so sadly and tragically lost their lives looking for a safer one. May they all rest in peace x

Aylan Kurdi Fund - Set up in honor of Aylan Kurdi. All donations go to Hand in Hand for Syria, a humanitarian agency.

Unicef - The UN's children's charity is helping provide clean water, medicine and psychological support to refugees. Just £9 provides an emergency water kit for a family.

Save The Children

Migrant Offshore Aid Station - Helping reach refugees who are in danger of drowning from overcrowded boats.

Facebook Page for those in Cornwall to help donate specific, much needed items.

Guest Post By Mia Lane: My Amazing Sister Needs Your Help

Hi all. My name’s Mia. The lovely Hannah has kindly allowed me to share a sad story that’s affected my family this month, in the hope that some of you might be able to help turn a tragedy into something really positive. 

Sometimes awful things happen to the people you love the most, and there are no words of comfort you can offer. All you can do is share their grief, be there when they need you and make a lot of tea. That’s the situation I find myself in right now.

Becca is my amazing sister. She’s funny, strong and super smart. Despite being the baby of the family, she’s the one who keeps me in check. She’s a primary school teacher in Liskeard and I can honestly say I’ve never met anyone who loves their job so much. She’d do anything for the kids and goes above and beyond to ensure they all leave her class at the end of the year feeling special.

Paul and Becca on their wedding day.

Last year she married her Mr Right, Paul, who’s the most supportive, kind husband she could wish for. They were delighted to discover they were pregnant last September and nicknamed their bump Lentil, because he was the size of a lentil when they received the good news. 

Two weeks ago Becca went into labour. The family gathered at my parents’ house in Plymouth ready for the birth. Everyone was so excited to finally meet Lentil. We went to bed on Saturday night hopeful that by morning we’d have news that he’d arrived safe and sound.

But it wasn’t to be. I was awoken by my Dad with news that Lentil hadn’t survived the birth. There’s no feeling like the sudden wave of shock and grief when you realise something terrible can’t be undone, and someone you want to protect so badly is enduring the most awful pain. 

Lentil Bear was born June 14th 2015

Becca and Paul had planned a home birth in Liskeard but were rushed to Derriford Hospital when Lentil’s heart rate unexpectedly started to drop. The hospital team began preparing for a C-section, but it was too late, Lentil’s heart had stopped. Becca delivered him naturally at 9 minutes past midnight on the 14th June in the Jasmine and Central Delivery Suite, a special unit set up for parents dealing with the loss of their baby. He weighed 8 pounds 11oz, with Becca’s tiny ears and mouth and Paul’s nose and feet. The whole family immediately fell in love with him, I was lucky enough to spend some time with Lentil at the unit and the strange combination of wonder and heartbreak on meeting a baby that hasn’t made it was like nothing I’ve ever felt. My main awe was with Becca and Paul who, through their complete devastation, managed to deal with the most horrific experience of their lives with grace, dignity and extreme strength. Their support for each other throughout has been a real inspiration.

At a time like this most couples would understandably shut the world out and grieve quietly, not Becca and Paul. Incredibly, they’ve decided to turn Lentil’s tragic death into something incredibly positive. They received huge support from the midwives and staff at Derriford, and thanks to the Jasmine and Central Delivery Suite special unit, were able to spend quiet time with Lentil before facing the real world. The unit needs to raise £200,000 to buy vital equipment and continue providing their incredible service. Becca and Paul set up the Lentil Bear Evans Memorial Fund to ensure that if other parents have to go through this awful experience, they will receive the same level of care and support from the Jasmine and Central Delivery Suite team. 

In just over a week they’ve raised almost £8000 for the fund, and are so grateful that Lentil’s story has encouraged so many generous donations and words of support. 

I could not be prouder of my sister and brother-in-law, it’s times like this that make you realise you don’t say those things enough. My sister’s ruddy brilliant, in fact, this experience has made me want to tell everyone just how incredibly kind, generous and loving my extended family is. I’m just sad Lentil won’t get to grow up knowing them all. 

There are still no words I can offer that will make anything better. And there are only so many cups of tea one girl can make. What I can do is help share their amazing story, raise awareness of the work of the Jasmine and Central Delivery Suite and ask people to support and share their amazing campaign, at www.justgiving.com/Lentil-Bear-Evans. 

All donations, no matter how small, will make a big difference to other parents during their saddest time, and will help offer a small glimmer of light to my amazing sister and brother-in-law that Lentil’s short life has left a lasting impression on our often unfair world. 

  

Thanks so much for reading this, it means a lot. And if you’ve got an amazing sister, remember to give her a squeeze and let her know.  

Mia with Becca and beloved dog Maisy.

Thank you for reading this post. When Mia mailed me to tell me of her sister and brother in laws story, as a parent it broke my heart. I would love this message to be spread as far and as wide as possible to help this increible unit continue to help support parents like Becca and Paul through one of those most unimaginable times of their lives. My love and strength goes out to you both, Becca and Paul as well to your family.

Hannah xx

The Big Sleep out for Julian House

On March 7th, myself and my beautiful friend Kat are heading to Alice Park in Bath with many, many others to sleep out for one night. Why are we sleeping in the cold, damp, dark night? To help raise funds for the fantastic work that Julian House do and need to continue doing.

Julian House help to support individuals providing them with warmth and shelter. But they do more than that. Julian House allows these individuals to seek some hope for their future by enabling them to do courses, training, get their birth certificates and many other important things that mean they can move forward in their lives.

Of course, sleeping for 1 night in a park isn't going to give me a true picture of how it really is to be homeless. I won't be searching for a place to sleep.I won't be facing the possibility of abuse, physical or verbal from passers by, some ignorant, some intoxicated. I will have with me many layers and a good sleeping bag to keep me warm. I'm well aware that sleeping out for 1 night could be considered a bit of a joke to some but it'll give me a lot to think about. It'll be a hell of a lot different than when I think of all those who have no home as I'm tucked up under my warm duvet in my bedroom listening to the pouring rain.

I'm hoping to raise £100 for Julian House so they can continue to support some of the most vulnerable in our society. If you would like to help me hit my target, please click this link which will take you to my Just Giving page. You can also text donate by texting HBBS £1 70070

Thank you very much for your support.

Hannah

Cupcake Mumma

*Gone Up a Mountain, Be Back Shortly*

That's the note I'll be leaving my Husband with tomorrow (I jest) but in all seriousness, tomorrow I am departing the Pasty Land (Cornwall for those not in the know) and making my way to Wales to climb a rather high mountain in a pink tutu and some saucy looking red underpants kindly being donated to us by Who Made Your Pants? I am definitely looking forward to this adventure...

I am going to miss my children terribly though! We've decided that it's best for me to take Midge to school tomorrow instead of her getting totally distraught at Mummy leaving for 3 days on a train. She knows I'm climbing a mountain, she has said she will miss me but she will remember why am I doing it. Oh yes, she is proudly telling everyone that:

'Mummy is climbing a mountain for poor people so they can have more money,' Sort of right, I suppose. She really does melt my heart! My Limpet (Little A) has no idea I'm going and will be joyfully waving goodbye to me having no clue that he's being with left with the 'Hairy One' we call Daddy for quite a long time.

Tonight we had pancakes for dinner, talked about all sorts of rubbish that children natter on about, read a really long bedtime story and had extra long cuddles before bedtime. I'm all packed and ready to go for my 10am train tomorrow morning. There is so much to look forward to on this journey but a hell of a lot to be nervous about. Not only is this a wonderful challenge Team Honk are undertaking to celebrate 25 years of Comic Relief and raising some serious funds, but this is also a personal challenge that I will blog about at a later date.

I'm so very, very nearly at my £250 target. Team Honk have been raising a truly wonderful amount of money thanks to the generosity of everyone and the Teams hard work. I can't wait to get up this mountain! If you can, please sponsor me here, no matter how much or how little, it really does help to change a life in the UK or Africa.

CupcakeMumma

Me? Climb A Mountain?

Yes, actually I am. I'm joining the fabulous Team Honk and a good handful of other people to trek up Mount Snowdon. Yes, me. Me who gave up on The 30 Day Shred by day 4. Me, who eats entire packs of Jaffa Cakes in under 15 minutes. Me, who is petrified of heights.

I'll be going with my good friend and fellow blogger, Kat whose blog you can find here. We're both on a more giving mission this year and I think helping to raise money for Comic Relief is just one more way of giving back. Comic Relief helps both those in the UK and Africa. 

So, as CupcakeMumma, I'm on the look out for some pink walking boots along with all the other trekking paraphernalia I'll need (I don't really 'do' exercise- heaven help me!) 

Wish us all luck!

CupcakeMumma

A Yummy Tea Party

I did my bit last weekend for Yummy Mummy Week and stayed up late Saturday night baking some cakes for a little tea party at my Mums house on the Sunday afternoon.

After a late night Little Miss got me up early so we could start making the butter icing. I chose pink (well done if you guessed before I got that far) and Little Miss went for orange which was a nice change. After all the cakes were iced we packed them all up to head over to my Mum and Dads house.

It was a nice afternoon, all my family were there, Other Half came with both children, my Gran came over as well as 2 of my Mum's friends. The cakes were very tasty and I baked flap jacks for a little something extra. Mum made some rather tasty dairy and gluten free chocolate muffins- they went down well!

With the left over cakes Mum took them into work yesterday to sell for a few pennies. I've managed to raise £23,00 from a small gathering and Other Half is adding a ten pound to that before I make the payments to Clic Sargent. It may not be much but thanks to those who bought a cake. It adds to the much needed funds for a very good charity.

Cupcake Mumma