Saturday, 21 February 2015

Rare Disease Day - Duchenne Muscular Dystrophy.

Next week is Rare Disease Day (28th Feb) and Action Medical Research have a new appeal focusing on 7 year old Tom who has Duchenne muscular dystrophy.

I wanted to share this appeal because when I was little, I had a friend called Steven Watson who had Muscular Dystrophy - I don't know if it was this same type as Tom or not. 

Steven Watson and I became friends at the age of 4 when we started Primary school and remained good friends through out primary - we were still friends, although not as close when we went on to the same secondary school. I can remember Steven running around in the infants just the same as everyone else, I can remember when he started needing crutches and then a wheelchair everyday and the way he laughed his socks off when he accidentally fell out of his wheelchair playing rounders with everyone else and I can remember when he had a shiny new electric wheelchair for secondary school, the one thing that never deteriorated was his smile and his kindness. 

I remember when he died, my first friend to pass away I think we were about 17 then. 

Steven Watson from Lancaster - my original home town - is on my mind a lot, he is remembered and that is why I wanted to help spread the word of Tom's story and the Duchenne Muscular Dystrophy appeal from Action Medical Research.


Spring has sprung for children like Tom as children’s charity launch an appeal around Rare Disease Day

Tom who has Duchenne muscular dystrophy,

More than 1.75 million children and young people in the UK have a rare disease – and thirty per cent will die before they reach the age of five. Children’s charity Action Medical Research, have launched a Spring appeal, tying in with the theme of Rare Disease Day (28 February), to highlight the need to fund vital research into devastating diseases for which there are often no cures.
The current appeal focuses on seven-year-old Tom who has Duchenne muscular dystrophy, but this is just one of the 20 studies tackling rare diseases that Action Medical Research is currently financing. These also include neuroblastoma (a type of cancer), ataxias, Smith-Lemli-Opitz syndrome, primary ciliary dyskinesia (PCD), brittle cornea syndrome, mitochondrial disease, Sanfilippo IIIB, lysosomal storage diseases, X-linked lymphoproliferative disease and severe anaemia.

Duchenne muscular dystrophy is a devastating condition that’s diagnosed in around 100 boys every year in the UK – typically when they are just three to five years old. Boys with the condition experience a relentless deterioration of their physical abilities, eventually becoming heavily dependent on others for round-the-clock care. There is no cure and the condition is fatal.
Tom (seven) was diagnosed with Duchenne when he was four, but his parents were concerned about him from his earliest days. “The health visitor stressed the importance of ‘tummy time’ to help Tom lift his head, but he couldn’t do it. He just screamed,” mum Rebecca remembers. “He was slow to reach milestones like crawling and walking, too.”
When Tom started school, Rebecca insisted on a referral to a paediatrician who explained that several conditions might be causing Tom’s problems, including mild cerebral palsy and dyspraxia. He asked to do a blood test ‘to rule out a couple of rare conditions’ but phoned at 9.00am the next day with devastating news: Tom had muscular dystrophy.
New types of gene therapy may be able to treat some but, at present, not all boys with Duchenne.
Researchers, led by Professor Volker Straub, of Newcastle University, and funded by Action Medical Research, are in the laboratory stages of testing a much-needed new treatment – with the ultimate hope of improving boys’ lives.
“For Tom this research could mean he walks and keeps upper body skills such as feeding himself for longer, giving him a better quality of life. I know it’s not a cure, but these potential treatments still mean everything to us, they give us hope and they might give us time. They take us a step closer to finding out more about this rare disease” says Rebecca.

Watch this short film about Tom’s story:https://www.youtube.com/watch?v=VWL2oGDeiKA&feature=youtu.be



Action Medical Research also funds research tackling premature birth, treating sick and vulnerable babies, and helping children affected by disability, disabling conditions and infections.
If you’d like to donate to the Spring rare diseases appeal visit

http://www.action.org.uk/rare



Emma in Bromley xx

Wednesday, 18 February 2015

Being Featured in Kent Life Magazine

I'm in the current (February 2015) issue of Kent Life magazine - page 48.

I was interviewed a little while ago by email and over the festive period a photographer snapped my pic.

I was really very excited about the whole thing, a very long time ago I used to work in the magazine industry for emap and I felt privileged to be asked to be featured under a spotlight on Bromley.

I didn't get sent a copy, apparently that's not something they do - I was quite surprised by that and so I popped into M&S to grab a copy as they have an independent stand for Kent Life.

But I didn't buy one, I was just so disappointed.

Firstly the Photo was unflattering and I just look so old and tired in it - perhaps I am just old and tired!

Secondly the "interview" wasn't quite right, there were bits missing - including a whole question, things had been rephrased or missed out - it just didn't feel like me.

And thirdly, they spelt my name wrong!

... But at least my mum was proud that I was in a magazine! 

It circulated twitter too!


Emma in Bromley x


Tuesday, 17 February 2015

Catching the Sewing Bug!

It's no secret that I love crafts - I love getting creative and having a go at a new skill.

Hobbycraft Sewing Basket

One of the things on my list this year is to learn to use a sewing machine - it was on last years' list too but I didn't get the chance - however this year I really do think it'll be the year I conquer the sewing machine as my youngest child is due to start school in September so for the first time in 6 years I might actually find myself with some me time to do one of the things on my (rather large, mostly crafts) list! I tried to use a sewing machine in school but my sewing attempts on a simple cushion cover were rather wonky and full of over stretched patches and uneven stitches! I have a sewing machine hidden in my inlaws loft - it's from 1982 and used to be my mums - I last tried to use it about 10 years ago but I couldn't get it to work - I'm going to have another go but it's likely that my birthday hint will be swapping from a kitchenaid free standing mixer (this has been on my list for 8 years by the way!) to a sewing machine! I have to say all the current ones are smaller, lighter and can do far more than the one from the early 80's I've got waiting to try!


Hobbycraft Sewing Machine

It appears I'm not alone in the sewing machine challenge - Hobbycraft (my favourite craft haven) have revealed that sewing machine sales are up 75% year on year, along with sales increases in both fabric (38% increase) and thread (13% increase).

With the return of The Great British Sewing Bee (season 3 currently on the BBC) Hobbycraft are predicting they will sell a whopping 40,000 reels of cotton, 55,000 metres of fabric and 4000 sewing machines while the programme is on air!

Kirstie Allsopp and Hobbycraft Sewing Kits

I'm a fan of all the handy kits you can get from Hobbycraft and I'm in love with this adorable Kitty Purse kit from the Kirstie Allsopp collection - and the kits for young children are great! My little boy is in the sewing club at school - he's 5 - he wanted to do it because he's also creative and because it's his old reception teacher who takes the club, I was in support because sewing is excellent for fine motor skills which makes it a great activity for young children :)



I don't normally do celeb gossip - I'm the last person you'd see browsing the pages of Hello but I'm loving the number of celebrity sewing fans - just look at these snippets! ;)
• Cara Delevigne spotted knitting backstage at LFW
• Gwen Stefani and • Eva Longoria have both confessed to be dab hands with needles and thread.
• George Clooney is rumoured to have rescued a date after her zip broke by stitching up the back of her dress.
• Katie Holmes received a sewing machine for her birthday.
•Julia Roberts is reported to be taking sewing lessons.
• and Chris Martin enjoys sewing his own clothes stating "It gives us some control over our visual identity" 

Google also revealed that both Knitting and Crochet featured in the most searched for "how to" terms for 2014

Cross Stitch Monogram E- knitting or crochet is also on my list of skills I'd like to learn - I knitted in my tweenie/teens and I've attempted crochet - I have an impressive Craft Pinboard of ideas waiting to be attempted!

I recently picked up needle and threads and started cross stitching again - another skill I used to do in my Tweens/Teens - my mum still has some cross stitch cards I made when I was about 14 :) I'm currently making a cross stich monogram keyring ... for my mum!









Monday, 16 February 2015

NSPCC Women as Protectors - Croydon - Can you Volunteer?

NSPCC Women as Protectors - Croydon
NSPCC in Croydon appeals for volunteers to deliver a new service to help mothers protect their children from sexual abuse

The NSPCC is launching a brand new sexual abuse service for mothers and other female carers who have a relationship with a man who poses a risk of sexual harm to her children. It could be a current or ex-partner or a member of her family.

Women as Protectors provides education, emotional support and guidance that can keep the family safe. Women take part in group sessions run by an NSPCC practitioner, followed by ongoing individual support through a trained and supervised volunteer.  Group sessions last for ten weeks while volunteers provide on-going mentoring for around 12 – 18 months.

The NSPCC needs women who are over 21 years of age to help them deliver this new service in the borough.

Sue Schofield, NSPCC Croydon service manager explained:As you can imagine, a woman in this kind of situation can feel isolated, confused and unsure about how to keep her children safe. Having a reassuring and supportive person to talk to can make a huge difference. That’s why volunteers are essential to this programme.

It’s a challenging role but very rewarding. You don’t need any prior mentoring experience. All you need is a willingness to learn and to help. And we’ll give you all the training and support you need.”

Volunteers will be carefully matched to each mum or carer.They will provide emotional and some practical support, suggest ways she can support her children, encourage her to make friends or take part in activities, and let the NSPCC know if they’re concerned about the children in any way.

To begin with they may meet once a week, but as the woman becomes more confident, visits could decrease to fortnightly, and then monthly towards the end of the programme.

Being Women as Protectors volunteer can give you a valuable experience and the chance to help a family through a difficult time. To find out more, to apply as a volunteer, or if you wish to make a referral, please contact the NSPCC Croydon service centre on 020 8253 1850 or email croydon.servicecentre@nspcc.org.uk.


Monday, 9 February 2015

Newman and Bright Sofas

We recently moved into our "forever home" and there is a lot to be done! I have grand designs in my head for each and every room!

The first room I'm starting with is the Playroom! We're using what should be the dining room - but with a 3 year old, and 5 year old - I don't anticipate much formal dining in the near future!

We don't quite have the spare guest bedroom so instead we are putting a sofa bed into the playroom so that it can be used as both a reading corner and the much needed spare bed for when family come to visit! I think I'd like a cord fabric sofa so we can snuggle up with a good picture book - I like the Rochester from Newman & Bright It comes with a memory foam mattress too so our guests would have a super great nights sleep! 
The Rochester Sofabed from Newman & Bright


The other thing I quickly noticed was the furniture we had bought for our old "bijou" house looks too small for our new family sized living room so new sofas and armchairs are definitely on the horizon!

With really small children,  I've always found leather easiest to clean and care for - seriously! Ours has scrubbed up well after incidences with vomit, wee, food, milkshake and crayons! - I'm not sure if a fabric sofa would be so resilient - so I'd go for a leather sofa again even though I know we are beyond the crayon and food on the furniture stage (I hope) - and I've absolutely fallen for Newman and Bright's The Cloud in Mango Leather and Apple Birch - beautifully Art Deco inspired and a reproduction of the classic designed by the Epstein Brothers - The Cloud is available in a selection of fabrics and leathers. 
Epstein Brothers Cloud Sofa by Newman & Bright
Epstein Brothers Cloud Chair by Newman & Bright
Find more sofa inspiration on the Newman & Bright website


Emma in Bromley xx 



Disclaimer, This post contains a sponsored link,  all choices, words and thoughts are my own.

Sunday, 8 February 2015

Maegans Mini Snowman

Last winter season we didn't have any snow at all and with the children being so young (3 and 5), it means that last time they played in snow, they were 1 and 3.

Blake Clement 3 and Maegan 1 Clement playing in the snow - Jan 2013


We had the teensiest spattering of snow which stuck earlier this week - it was hardly anything and had gone completely just after lunch.

Meg was ever so excited and I have to say - it was tough to send Blake into school because all I could think of was that this tiny bit of snow is the first they've had in 2 years and that there may not be any more - and as important as education is, when you are little - playing
in the snow is also very important when you are only five! - in my opinion, sometimes primary school particularly key stage 1 should be a little more flexible to allow a little "life" 

Daddy's train to work was delayed anyway so he walked a Welly clad Blake to school - on the way they played with the snow and threw a snowball at grandma - whose house they pass on the way.

Maegan just couldn't wait and had a spontaneous play in the snow on our front doorstep before we'd even had a chance to wrap up first!

Maegan Clement (3) playing in the snow January 2015


Maegan built her own little snowman, she was delighted with him and I have to say she included some lovely details!
Maegan Clement (3) playing in the snow January 2015


She sat him down on the doorstep and chatted away to him, taking care to add some hair!
Maegan Clement (3) playing in the snow January 2015


She scooped him up and cuddled him - such a sweet moment, I had to capture it.
Maegan Clement (3) playing in the snow January 2015

However, I wasn't quite ready for what she did next with her snowman!


Unfortunately the snow didn't last till school home time but Blake chatted about all the fun he had on the way to school with Daddy and we are all hoping for a small snowfall again so we can play some more!

After all that cold outdoor play and school snow/rainy/freezing walks we enjoyed some yummy hot chocolate :)

Belle and Boo cup of Hot Chocolate

Tuesday, 3 February 2015

Monday, 2 February 2015

Darkmouth - Shane Hegarty - Book Review



Darkmouth - Shane Hegarty - Book Review



The book that can’t wait to get its teeth into you!

Darkmouth by Shane Hegarty is a brilliant tale full of monsters "legends" and is full of adventure and imagination sparkers!

It's aimed at children aged 9+ but I'm being a little naughty and reading carefully selected parts of it to my very "Halloweeny Monster Obsessed" five year old and although we haven't finished the story yet, so far we are BOTH enjoying it very much! 

The book has full page illustrations inside which are just fantastic, great detail - and I just love that there is a map of Darkmouth in the front - as a kid, I was always a fan of the books with maps and I think we can all agree that all kids love a good map!

I love the style of this book, and all the monsters - or should I say, Legends are ones that you will know - Minotaur, Hydra, Chimera and Manticore are just a few that are in this book - with more books to come in the future!

The book tackles the importance of family and friendship  - with the fate of the world resting on the shoulders of 12 year old Finn ... who tries really, really hard!



Darkmouth - Shane Hegarty - Book Review

Darkmouth
A monstrously funny debut from the new star of middle-grade adventure.
THEY’RE COMING!
Legends (also known as terrifying, human-eating monsters) have invaded the town of Darkmouth and aim to conquer the world.
But don’t panic! The last remaining Legend Hunter - Finn - will protect us.
Finn: twelve-years-old, loves animals, not a natural fighter, but tries really, really hard, and we all know good intentions are the best weapons against a hungry Minotaur, right?
On second thoughts, panic.
PANIC NOW!
• The BIGGEST LAUNCH for HarperCollins Children’s Books in 2015. Acquired in a hotly contested auction at Bologna 2013
Darkmouth - Shane Hegarty - Book Review
• Following Darren Shan and Derek Landy, comes the next HUGELY talented Irish author... Shane Hegarty. For 9+ readers, DARKMOUTH is fast-paced, funny and a little bit frightening. Arm yourself for the first book in an supernaturally sensational new series
• MONSTER-SIZED, out-of-this-world marketing and PR campaign – details coming soon!
• A deluxe early proof edition will be available
“Shane Hegarty explodes into the fantasy universe with Darkmouth. An incredible debut. Hilarious and exciting. Terrifying and heart-stopping. Everything a great fantasy series should be. The next big thing is here.” Eoin Colfer, author of Artemis Fowl
“Believe the hype. The relationship between the young hero and his father is touching and real. There are touches of Ghostbusters, along with some Bond-like gadgets, plus a rather Dickensian setting (the mist-swirling town of Darkmouth). This fantasy adventure is a stunning debut.” Sarah Webb 


Darkmouth available from 29th Jan 2015 

http://www.darkmouth.co.uk

There's also a competition running on the Darkmouth website to win a limited edition tshirt.



Emma in Bromley xx




Disclaimer - I received a copy of the book for the sole purpose of being able to review it.