How Family Fund has helped us and how they could help you!

A Little Bit About Family Fund

Logo

Family Fund, like so many other charities, helps families like ours across the UK. If you are raising a disabled or child who is seriously ill and they are under the age of 17 and are on a low income, Family Fund may be able to assist you as a family or the individual child.

Last year, Family Fund provided over 88,000 grants and services worth over £33 million to families across the UK but without regular money coming in they wouldn’t be able to continue the great work they do. We were one of those families. Thanks to their kindness and grants, we have been able to proper time together as a family.
Family Fund was first established in 1973, and the first grant of £26 for hospital visiting costs was issued on 1 April 1973. In 1996, Family Fund became an independent charitable trust. Today, they are funded by the four UK governments, private donations and income they generate through the work of their Family Fund Business Services.

Our Story

20170815_193603

We discovered Family Fund through our son’s Occupational Therapist. We wanted to go on a proper family holiday, but having recently given up work to care for our disabled son, we only had one income, and it was a struggle. So we discovered Family Fund, and I was pleasantly surprised by how straight forward the application process was. Our application was sent via the post with the supporting documentation, and it was roughly four weeks before we had our first approval. We’d applied for a Haven holiday voucher. Like most charities, you have to have a particular item or holiday in mind when you apply. They offer Ipads, white goods, garden modifications, holidays, clothing, just to name a few. You can apply, however, to change your funding once it has been approved if you want to change your award. We have never requested two items, but I have friends who have applied for money towards a holiday and garden equipment like a trampoline.

Once the voucher is awarded. It takes seven days to be credited to Haven or the appropriate holiday provider. Our first voucher we’d already booked our trip, so I called up and told them about our award, and they credited the amount to our holiday. This has since changed, and you can’t use the voucher for any holidays already booked. You can, of course, book two trips and use the voucher towards both.

What it has given us

We are no longer cramped in a budget hotel, in one room having to go to bed at 9pm with our son, having a caravan provides us with the flexibility to put him to bed and sit in another room and spend time with our daughter. We have found both Haven and Perran Sands to be so accommodating. Thomas is sensitive to noise, so we have always requested a caravan away from the entertainment centre. For the first time, this year have requested an accessible caravan as it was a struggle last year.
We have used Family Fund now for three or four years, I logon to our online account and once a year request a Haven holiday. They limit you to once a year applications for obvious reasons although in exceptional circumstances the may accept a further application.

How can you help them

It is often underestimated how much it can cost to raise a disabled child. In fact, on average, it costs three times more to raise a disabled child compared to a child without additional needs. Family Fund understands this and is committed to help families, improve their quality of life and help them feel included. A big key to their success is fundraising.
Every penny raised will help Family Fund continue to develop and deliver new ways to support families raising disabled or seriously ill children.
Whether you fancy hosting your own Messy Tea Party or Dress Fun Friday on the 21st June 2019. There are still so many families to help! Please check out their website for more information about how you could help.
If you have any questions about donating to, or fundraising for Family Fund, you can speak to their Fundraising Team on 01904 550033 or email fundraising@familyfund.org.uk.
*We are not affiliated, associated, authorised, endorsed by, or in any way officially connected with the Family Fund or Haven Holidays.*

What I Learnt Having a Son with Epilepsy

Purple-Day-picture

On Tuesday 26th March 2019 it was Purple Day! For those of you who are unaware of what ‘Purple Day’ is, it is the international day for epilepsy. It is a day where people around the world come together to raise awareness of the condition and make a difference to those affected by epilepsy.

Finding out you have epilepsy is scary at any age. Finding out our son had epilepsy just after his third birthday was terrifying. We were in the middle of moving house, lots of upheavals, messed up routines and living in limbo. It was like any other day, I was off to work (I worked shifts at the time) and I sat and watched as he ate a biscuit. He suddenly started coughing, almost choking. There was something odd about it as he went blue in the lips, they were smacking, starry-eyed and dripped excessively. Before it had really started, it was over and he cried and seemed dazed. I gave him a cuddle and we all assumed he choked on the biscuit. I went off to work and left him to his evening but on arriving at work. I had five missed calls from my terrified husband. He’d had the same gazed expression, choking appearance, blue lips etc every 15 minutes since I had left. He was tired so suggested they do his usual routine, put him to bed and hopefully he’d be okay. An hour later and another 10 missed calls, it was apparent that something was wrong. He’d been doing it while asleep. I was a 30-minute drive from home so shaking like a leaf I approached my Manager. I explained the situation and called 111 from the car (I have a hands free kit connected to my car). They were speedy and dispatched an ambulance.

When I arrived home, I met the ambulance crew who had just arrived and were assessing him. He was still having episodes every 15 minutes and seemed confused and dazed. My husband was a bundle of nerves. Off to the hospital we went for medication and observation. It was confirmed it was epilepsy, highly likely linked to his brain damage and cerebral palsy and so began our epilepsy journey.

We have never been seizure free and every six-eight weeks we usually have an episode. I thought I would take the time to share what we have learnt over the last five and a half years.

1. Seizures – No seizure is the same, no episode is the same and you will continuously wait or expect the next one and sleep seizures really are a thing!

The media has always lead us to believe that seizures are the ‘drop’ ones where you drop to the floor, shake and go unconscious, we quickly realised that there are:

1. Focal/Partial Seizures – Can remain conscious and aware.

2. Absent Seizures (Petit Mal) – Can appear to be staring or doing normal things.

3. Convulsive Seizures (Tonic-Clonic) – Usually the person will loss full conscious and will drop, jerk and have no awareness and will awake dazed and confused.

4. Drop Seizures (Atonic) – There is awareness of attack, just abruptly hitting the floor.

5. Clonic Seizures – Part of the body has jerky movements

6. Tonic Seizures – Infrequent and usually associated with other conditions, they involve facial muscles the upper body, usually involving loss of bladder/bowel control.

7. Myoclonic Seizures – Jerky movements, that can affect any part of the body.

At some point or another, Thomas has had the misfortune to have experienced five out of the seven types.

2. Medication – There is no magic cure, five years on and although they are under control, he still is prone to ‘clusters’ and I mean a day of ‘clusters’. His record his 19 in a day! We have rescue medication for this.

3. Triggers – It would have been easier, had a trigger been obvious. Apart from stress and citric fruits like fresh oranges. Nothing was ever confirmed but to some people triggers include flashing lights, stress, lack of sleep, certain food, drinking alcohol and changes in the weather.

4. Dealing with anxiety as a family – You can never prepare yourself for the news that your child has a life-changing condition. When I first found out I ‘googled’ and wished I hadn’t. There was so much information, too much information that it was hard to understand how we would live like this. Different medications meant different side effects, then there is the controversy surrounding medication and development delay; unfortunately, we didn’t have a choice.

It was hard, in those calling ambulances, trying to remain calm for our six-year-old daughter and trying to get Thomas the help he needed it. After the few hospital trips, I realised that it was unnecessary stress for Thomas as he was kept in overnight for observation and never understood why he couldn’t leave.

It does get more comfortable, but at the back of my mind is. ‘Will it is today.’ Having never lived it, it’s hard for others to understand the strain it puts a family under. Always watching, waiting for the next one.

5. Plans

We’ve learnt that epilepsy has no consideration for family events, days out, Christmas, birthdays. When one is coming, it will come and plans change. We’ve driven to theme parks only to have a seizure in the car on the way. I’ve had days out plans and had to cancel them. I do not mean to sound selfish, really it’s just about the circumstances that ‘normal’ life gets put on hold for 24 hours.


Epilepsy First Aid

1. Keep calm.

2. Protect the child from further injury

First-Aid-Banner_1

3. Do not restrain the person.

4. Do not insert anything in the mouth.

5. Roll the child on his/her side after the seizure subsides.

6. If a seizure lasts longer than five minutes or repeats without full recovery, seek medical assistance immediately.

7. Talk gently to the person after the seizure.

For young children and their families, it can be terrifying. Today, seven more children will be told they have epilepsy, it will change their lives forever. This Purple Day, the money you raise will help more children and their families come to terms with epilepsy, know they are not alone and give them the confidence to deal with their diagnosis.

Having a son with epilepsy changed our lives. I wish that we’d been offered counselling, support dealing with anxiety, help as a family, I wish that someone had sat us down and said ‘I’ve been there, let’s have a coffee?’ Sadly, all too often like us you are given a leaflet and told to ‘google’ support groups.

Was this the same for you? Do you wish you’d received more support? Do you think things should change? Perhaps you are still struggling with your epilepsy or your children?

Do something amazing and raise money for children affected by epilepsy

Thanks for Reading…

My Son was Born With Strep B…

There has been a lot in the news lately concerning Strep B. I am very much an advocate for educating and share a lot of news from The Group Strep B Support website. There is a whole host of information and Jane Plumb MBE, is the founder alongside her husband, Robert. Please have a read. Their campaign to improve awareness is fantastic.

I find writing about my son, Thomas the hardest. Not because I don’t want to but because unless you’ve lived it or you live it, it’s hard to understand. And if I’m honest, I’m not sure if I’ve ever come to terms with it. Thomas was four days old in the photo and at the height of the infection.

However, I am currently sat on Thomas’ bedroom floor while he sleeps, I will try to sneak out again in five minutes, but this is where you will find me between 8.30pm and 10.00pm most evenings.

I want to share Thomas’ and our story because as a Mum, we read all the books, we listened to what Doctors, Midwives and what everyone else said and none of it mattered.

Thomas is our youngest child, he has an elder sister called Alana. Both straight forward and relativity uncomplicated pregnancies. Both born naturally and healthy, I guess you could say. Thomas wasn’t right from when we arrived home, call it gut instinct.

At three days old Thomas was back in the hospital fighting for his life after being diagnosed as having Group B Strep, it’s a bacteria that usually is quite harmless lives in the gut or vagina however on birth it was transferred to Thomas. He went on to develop early-onset Strep B meningitis and spent three weeks in the hospital. Looking back, three weeks was nothing really, but at the time I was 40 miles from home, it was hard for visitors due to the distance and Thomas was extremely ill.

What shocked me was that I had no awareness of Group Strep B or anything related, there had been no leaflet in my maternity pack, no posters on the wall. It never hit my radar, until the Doctor uttered the words I will always remember. ‘Your son, has meningitis…have you ever heard of the Strep B infection?’ That sentence changed our lives. Ironically, I sat in the Doctors waiting room three months after his birth opposite a Group Strep B poster!

Thomas was a little fighter and the photo above was taken last year celebrating his eighth birthday! A day that has now become a big deal in our house as it reminds us of how far we’ve come. I don’t want to dwell too much longer on the past. I can be honest and say that Thomas has a multitude of problems ranging from epilepsy, cerebral palsy, learning difficulties, speech and language delay and social disorders but he’s Thomas and a daily challenge but he’s our miracle.

I will talk more about Thomas, epilepsy, cerebral palsy and other related things over the next few months. If you have any questions, please feel free to contact me. If any of you have been affected by any of this, please share any thoughts and feelings. I do have a facebook group ‘Group B Strep Awareness’.

Thanks for reading…

*All opinions are my own, I have not been sponsored, paid or gifted any items in respect of my views and opinions. I also apologise if you found any of the images upsetting*.