Seize control: the impact of your child having a neurological disorder

You might remember my good friend Lorna who has written before for Glasgow Mummy? I've invited her back to share her story on the diagnosis of her baby girl having epilepsy and how this has changed her perspective on what matters...

"The EEG has confirmed that Amie is having epileptic seizures with loss of consciousness. The words hit me like a punch in the face although I didn't fully take it in.

In May this year whilst still on maternity leave, my youngest daughter Amie, aged 5 months, started having seizures out of the blue. At first I didn't know what they were and I've since learned that seizures can present themselves in many different ways. I noticed she was unresponsive at times and the colour drained from her face. It turns out she was having focal seizures and stopped breathing for up to a minute at a time. After a spell in Yorkhill Children's Hospital she was diagnosed with epilepsy and will now be on anti seizure medication for some years.

I thought I knew what epilepsy was, but turns out each person's experience of epilepsy is unique, and it mattered more now that it was my own baby. I thought I was a resilient, strong person and suddenly felt helpless. How was I going to return to work? How would our family cope financially, logistically and emotionally? What if she has a serious chromosome abnormality which means she can't lead a normal life, unlike thousands of others who have this condition and manage it successfully? Many of these questions still worry me, and I don't take things for granted as much as I used to. In particular, I was overwhelmed by the support I received from my family, friends and my employer with flexible policies like emergency and carers leave. 

We are still waiting on test results, her seizures are still not under control, the last one being 5 weeks ago, and they have progressed to tonic-clonic seizures where her limbs shake. What I have discovered is that there are many families out there whose lives would be improved if they had an epilepsy seizure alarm which triggers if a nocturnal seizure occurs, alerting us to check that they regain breathing and consciousness. This helps prevent sudden unexpected death in epilepsy (SUDEP). These alarms retail at £500-£700 each. They are not available on the NHS and two charities who donate them to families have waiting lists of over 250 people at this current time. So I've decided to fundraise for this cause and welcome any contributions."  

If you would like to make a donation, please click on the link below: 
http://www.virginmoneygiving.com/SomeoneSpecial/amiethebear

or you can follow Amie's story and progress here at www.facebook.com/amiethebear

More information on the two charities can be found here:
www.muirmaxwelltrust.com      

www.thedaisygarland.org.uk

Charity: Race for Life 5K with Scottish Power

On Sunday I participated in the Race for Life 5K event at Glasgow Green. I was going to say I ran, but it was more like a jog. It's been a number of months since I was running regularly (I just checked back in my Nike app on my phone and it was in September 2014 that I was running once a week, since then I've done only two runs!!). For a number of reasons I hadn't trained: partly due to my Crohn's playing up; partly due to lack of time; and if I'm honest partly because of the weather (although that's not really a decent excuse, you just need to dress appropriately for the conditions).

Anyway, you will be pleased to hear that despite not training I managed to jog the route in 31 minutes (I felt that deserved to be in bold!). I have to say I was pretty chuffed with myself.

I chose to run for Cancer Research UK because my mum lost her battle with cancer in 2001 and was taken from us too soon. She was 51 years old when she died. I was 19 years old, and my little sister was 17. We were too young to lose a parent. You can read my diary entries from the time on the blog: Part 1, Part 2, Part 3 and Part 4.

Due to the amazing work of scientists and researchers, today one in two people with cancer will survive.

Lot's more can be done though to beat cancer sooner.

The atmosphere on race day was mixed. I felt quite emotional - reading everyone's stories on the backs of their shirts really put things into perspective; and yet I also felt inspired and that I really was making a difference, even if it was just a little one. 

That morning I woke up early before the kids and had some porridge (with Lactofree milk!) and fresh fruit before getting dressed and ready. My daughter painted my face in a few different pink colours and with plenty of glitter! She helped me choose the Pink Army tattoos to wear and looked out a pink party hat for me. 

The run itself wasn't as bad as I had anticipated. It was a bit wet and windy in Glasgow, but the rain was refreshing, for once! It was bizarre running through the empty streets of Glasgow, particularly Buchanan Street with a sea of women in pink t-shirts around me. There were plenty of supporters along the way which helped keep me going.

I made it round the course with my Scottish Power 'High 5 me!' foam hand... which to be honest was a hindrance but I carried on regardless!! 

Scottish Power are raising support for Cancer Research UK through the High 5 Wave. The target is to reach 60,000 high fives to raise £35,000 for the charity. 

"High fives are a symbol of achievement and celebration for all of us every day. We want to use high fives to generate positive energy in the fight against cancer" Scottish Power 

I added my High 5 and joined the wave at the Scottish Power marquee after the race!

If you would like to donate some money to my JustGiving page, you will find it here (www.justgiving.com/glasgowmummy).

Or why not take part in an event yourself? They are being held across the UK and you can find an event near you here.

Disclosure: my race entry was paid for and I was provided with promotional material for the run by Scottish Power.

Give It Up For Christmas

With Kids is an organisation operating out of both Glasgow's East End and South West Edinburgh that aims to build self-esteem and resilience in children, whilst recognising the need for practical and emotional support for families. They achieve this this in a number of ways, for example individual play therapy, therapeutic group work or family groups and activities.

This Christmas, With Kids charity and Mantra (a Glasgow-based content agency) are asking you to Give it up for Christmas. By giving up a little extra spending and donating the money instead you can make a huge difference to families who may not be managing so well this festive season. It's not about giving something up for good, just foregoing a small treat and donating what you would have spent to those that need it more.

Every single penny that's donated to the With Kids JustGiving page goes to With Kids. You can also donate by texting GIUP995 to 70070 to donate £5, GIUP9910 for £10 etc.

How can your donations help?

£1 = a selection box
£5 = a hot meal
£15 = a present from Santa
£25 = a warm winter jacket

I normally spend lots of money on Christmas cards, and this is something I'll happily give up this year! I'm going to send cards to my immediate family and perhaps a few friends, but I won't be sending out the hundreds of cards that I used to do. Instead, I'll be making a donation to With Kids.

So tell me, what would you give up this Christmas?

Getting festive - Disney Store's Share the Magic

This week we were delighted to attend the Disney Store at the St Enoch Centre, Glasgow for the VIP launch of their annual charity campaign 'Share the Magic' with In Kind Direct.

The 'Share the Magic' initiative invites families to post their own Letter to Santa at Disney Stores across the country and for every letter that is posted, a Mickey Mouse soft toy is donated to a child through their chosen national charities*. This is the 6th year that Disney Store has run the campaign and this Christmas is set to see the 100,000th soft toy donated. If you can't get to a Disney Store, then you can still participate online where you can use the letter writing tool and post your letter digitally.

This year Disney Store is supporting In Kind Direct. The charity redistributes quality, usable products donated by some of the UK's best known manufacturers and retailers to charities working in the UK and abroad. Disney Store is one of In Kind Direct's founding donors, first donating in 1997. Since then the Disney Store has donated over £2.6 million worth of toys, clothing and accessories.

The kids and I got into our Christmas clothes & accessories, jumped in the car and headed into town for the event.

We had great fun making snowflake decorations for our Christmas tree and posing with Mickey Mouse. We then wrote our letters to Santa before posting them in the magical post box. I even enjoyed a wee sparkly mince pie, or two (don't tell the PT!).

There were a few celebs attending the event, although I didn't spot any of them at the store on the evening!

If you're CBeebies fans like us, then you'll recognise the stars from Wooly & Tig!

This is Jane McCarry with her family; she is better known as Isa from Still Game

And here we are!! I was loving my son's Santa shirt with red bow tie - we got it at Primark if you're wondering. (Although he looks a bit crazy in this photo!!)

The kids were very lucky to be given a goodie bag each as we left the party that included a festive Mickey Mouse soft toy and a Christmas decoration. We also received a gift voucher for the store which promptly was spent on a small Star Wars set for the eldest and a princess nail polish for the littlest. Nothing for mummy unfortunately!

*A maximum of 25,000 soft toys will be donated.

77th Scouts & RBS Finding Scotland's Real Heroes

You might remember from the middle of last month that I was the ambassador for STV's 'RBS - Finding Scotland's Real Heroes' Young Real Hero category. I was delighted to attend the Awards Ceremony and met some of the inspirational nominees.

The winner of my category was the The Volunteers of the Glasgow 77th (Disabled) Scout Group. The group happen to be based in Glasgow's Southside so it wasn't difficult for me to visit them for an interview...

The volunteers with Carol Smillie at the awards

My kids are a bit young for the Scouts so Michael Shanks, the Group Scout Leader, started off by explaining a bit of the background of the Scouts and the 77th group in particular.

The Glasgow 77th (Disabled) Scout Group follow the same programme as the Scouts, although some of the activities need to be adjusted ever so slightly. They provide adventure and personal development for boys aged from 7 years up to 25 years with physical disabilities and life limiting conditions. The groups has four sections: Cubs, Beavers, Explorers and Network.

I visited the Cubs first:

The sections each meet on a Monday evening at different locations across the Southside. There isn't a catchment area to join and a network of nine buses cross the city each night to bring the boys to their meetings. The Cubs are crying out for new members; as such there isn't a wait list to join. Whereas, the older age groups are fully subscribed just now.

At each meeting the sections will start off with some games; it was football and bowling that were on the go at the Cubs during my visit and everyone was having great fun. After this the plan was to do some badge work and then a Scout activity. Programmes are balanced and organised in advance.

The group employs no staff and is run entirely by volunteers. Michael explained that finding helpers tends to be easy; it's finding the children that can prove more difficult.

Michael works for a children's charity by day and has been volunteering with the Scouts for 10 years now. He dedicates a considerable amount of time to the group, mainly due to the administration that goes on behind the scenes. I asked Michael what motivates him, and despite it being a difficult question to answer (one that he should have been prepared for as he told me STV asked him the same!), he said that volunteering with the group is great fun and it gives him huge satisfaction seeing the boys do something they've never done before, such as swimming. 

At Summer Camp

The group do activities the schools can't do and that are difficult for the parents to do. It's also a different type of relationship that the volunteers have with the members as compared with teachers or parents. The boys can spend their life being 'mothered' whereas the volunteers tend to be young boys themselves. They're being helped, but not smothered.

The boys also head to Glengoyne Lodge for weekend camps twice a year where they stay in their purpose built accessible outdoor centre. There are big plans for the future as the lodge now needs refurbished to accommodate the changing needs of the boys; it's not suitable for electric wheelchairs for example.

Glengoyne Lodge

Being recognised in the RBS Finding Scotland's Real Heroes awards has increased the group's profile, having shied away from the press in the past. It's hoped that the group will secure some funding to assist with upgrading their facilities and a few new members have joined since the group were featured in the TV series. 

Kultaran Aulak, the Cub Scout Leader, became a helper to enhance his CV and he's now been with the group for 10 years (by day he's a pharmacist). Similarly, Kerrie Downes, the Scout Network Leader that I met at the next section I visited, has been volunteering for 9 years. Kerrie is currently studying for a PhD in Mechanical and Aerospace Engineering just now - isn't that amazing! Kerrie has grown up with the boys and remembers the first boy that she helped - they reached their 18th birthdays together. 

The Scout Network tend to meet monthly, but the disabled network group are unique in that they continue to meet weekly. The members, aged 18-25 years, work towards badges, and some can take up to a year to achieve. As I arrived everyone was sat around the tables doing some map reading, which reminded me of my time doing the Duke of Edinburgh Awards. A number of the helpers at the group in fact are participating in the DoE programme which I learned is part of the Scout curriculum.

I headed home feeling truly inspired. The volunteers give up so much of their free time, and they all have demanding day jobs too. They most definitely deserved to win that trophy!

And lastly, if you have read this post and wondered how you can perhaps get involved with the group, then look no further... There is a Committee that is involved in the running of the group to help support and guide the charity and they are currently recruiting - find out more here. 

{Ice Bucket Challenge and MND Scotland}

The ALS MND Ice Bucket Challenge was started to raise awareness and money for Motor Neurone Disease (MND) Association in the UK and the Amyotrophic Lateral Sclerosis (ALS) Association in the US although a lot of people started to donate to other charities too.

Motor Neurone Disease is a group of illnesses that cause damage to the nerves (motor neurones). These are the nerves that control our muscles. Initial symptoms are muscle weakness. Different muscles may be affected in different people, so some may have trouble walking or lifting their arms whilst others can struggle to speak, chew and swallow. The disease gets worse with time and may also spread to other muscles. Sufferers can lose the use of their limbs or parts of their body.

I was nominated for the challenge three times, and with much consideration I had decided not to participate. I was of the opinion that throwing a bucket of ice over my head wasn't going to achieve anything as there were so many other videos already out there. When I had seen that people had injured themselves, and I think someone even died participating (not sure if that was a hoax or not) then I was keen for the challenges just to stop.

That was until my friends Peter & Jenn came to Glasgow from Newcastle for the weekend and I was sort of forced to participate. Peter was the first to nominate me!

It was absolute carnage.

I had explained to the kids that R was going to pour cold water over mummy's head and got them watering cans full of cold water so they could join in too.

Both they and I did not anticipate just how cold it was going to be. Cue my screams, and then lots of screaming and upset from them as they thought I was hurt or something. My son, bless him, went after R and tried to defend me...watch the clip below to see what happens! I suggest you turn down your volume though if you don't want to be deafened!


   

The most important thing though is to donate. I donated to MND Scotland. You can make a contribution to them by texting ICED14 £5 to 70070 to donate £5.

I didn't nominate anyone, but I ask you to please watch this... it's the last ALS Ice Bucket Challenge that you need to see:

{Kinder Handl - Preloved Children's Items}

The other afternoon I popped along very quickly to Kinder Handl.

My friend Rhona had recommended the shop a while back, and for a long time now it's been on my list of places to check out. Anyway, I finally got along for a visit and I was thoroughly impressed, so thought I'd share the details with you here :-)

Kinder Handl

1054 Cathcart Road

Glasgow

G42 9XW

Mon - Sat: 9.30am - 5pm

Sun: 10am - 4pm

Kinder Handl is a not-for-profit community shop selling pre-loved children's items. 

Kinder Handl collect or receive children's items that you no longer require, and in return they do the advertising and selling to maximise the profit.

All funds raised go to Yorkhill Children's Charity. 

The community organisation welcome all families and friends to come and play at their shop and make any purchases from their wide selection of affordable pre-loved items. 

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The set-up at the shop is fab and we were quickly welcomed by the friendly volunteers (none of the staff take a salary). There's plenty of space for little ones to play, and there's even a small reading corner where you might find a storytelling sessions being held.

The selection of toys, books and clothing was impressive and everything was very reasonably priced. There really was a happy vibe about the place.

I'm suitably impressed and most definitely will be paying them another visit soon when I have more time to browse.

You can even have a free tea or coffee whilst you are there!

They also offer free delivery of larger items, so if you spot something on their Facebook page you can make a purchase without even going into the shop. What more could you ask for?

{Half Marathon}

Tomorrow I will be running (jogging!) in my first ever race... the Edinburgh Half Marathon. My sister, her work colleague & I have been raising money for Macmillan Cancer Support and to date we have raised over £4000. I am delighted!! I know my mum would be so proud of us.

Please keep your fingers crossed for me... the race starts at 8am tomorrow morning. Eek!

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