What if you are wrong?

Right now I am tired, tired of the opinions of those who think they know best. Tired of armchair experts ripping apart years of work and dedication from scientists worldwide. Tired of hearing ‘Liberty over life’.

I guess you could say I’m tired.

The thing is it’s ok, it’s ok for you feel this way and to have this opinion, I celebrate free speech at its best. Still free speech doesn’t come without consequences and right now all I can see is free speech at its worst.

I was once told by a Doctor “what if”

I was apologising for being a little over anxious with Daniel. For getting him checked out a little early than needed. Only for the Doctor to put his hand on mine and say “what if”. What if you hadn’t of brought him in and it was that sodium issue you feared, what if those chest noises was pneumonia, what if, what if.

So right now everyone and their dog, parrot, chinchilla has their opinion on Covid 19, it’s a myth, a government conspiracy, something we just have to learn to live with. All things I definitely disagree with and to what I answer “what if”. Yet what is really bugging me now is the false propaganda of the vaccine “Beam me up Scotty” being only one of the few theories I’ve heard. I again question you “what if?

Now don’t get me wrong I’m not telling anyone they should get the vaccine, my personal opinion is ‘get in the line’ but my decision is mine and I was so grateful to receive mine a few weeks back. Yet if I am asked by another for advice I point them towards the experts, the scientific community who have dedicated their lives to the study of diseases etc. People who know their stuff. I’m not an expert.

Yet I am finding myself seeing so many people on forums, Facebook pages , seeing parents especially being attacked for their decision to vaccinate and want to get their child vaccinated. Again I cry out “what if”. What if the fear of your judgement stops that person getting vaccinated and they then pass the virus on to their family. What if Grandpa Joe cannot fight the virus, auntie Katie, cousin bill etc etc.

What if.

What if people start listening to the pseudo science of false theories and harmful articles spreading it to the extent that more lose their lives “what if”.

I love this world, our creative, imaginative, far reaching minds. The uniqueness of each of us is to be celebrated. Yet please, free speech is not free if it causes harm to others. I don’t challenge your opinions, they are yours to own what I do challenge is that before you spread them far and wide you ask yourself What if.

What if .

So it’s October

So today is the start of October and to me that also means the start of Rett Syndrome awareness month.

This is a month that I work like to crazy to let everyone know about the devastating condition Rett Syndrome.

I have to confess I find Rett Syndrome awareness month hard.

Everywhere I go I am reminded of the condition that stole my daughter from me.

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I see the photos, the blog posts and infographics and to be completely truthful I want to scream.

I know this is wrong of me but as much as I want to raise awareness I also want to hide from all that is Rett syndrome.

But I can’t and I won’t.

I may have lost my beautiful girlie to this awful disease but I do not want my friends to lose theirs.

I want everyone to know about Rett Syndrome.

I need everyone to know what amazing strides are being made in research.

I must make everyone know how much fundraising is needed to help fund research and to also help support those effected by the syndrome.

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So self pity aside October is Rett Syndrome month and I will be doing my best to let you all know that this condition is out there.

What it is?

Debilitating neurological (movement) disorder that predominantly affects females.

Baby girls are born “normal” but begin to lose acquired skills between the ages of 1-3 years old.

Caused by a single gene mutation that leads to underproduction of an important brain protein.

The leading genetic cause of severe impairment in girls – most cannot speak, walk or use their hands.

Despite their physical disabilities, girls with Rett Syndrome are believed to be functioning mentally at a much higher level than previously thought.

As prevalent as Cystic Fibrosis, ALS and Huntington’s.

Who it affects…

Usually affects girls from 6 to 24 months leading to a devastating loss of developed skills.

That every 90 minutes another little girl is born with Rett Syndrome

And that the greatest news is that….

Rett Syndrome is a potentially REVERSIBLE disorder. Research has proven once protein levels are back to normal levels, symptoms subside.

Did you get all that?

Outside of the Scientific community Rett Syndrome is still relatively unknown. Yet Rett Syndrome is a leading genetic cause of severe disability in females.

This is why we need to raise awareness.

People need to know more about Rett Syndrome.

They need to know that research into this condition has already shown the potential to help unlock other neurological conditions including Alzheimer’s and Parkinson’s.

What you also really need to know is that besides all these devastating symptoms what Rett Syndrome does not take away is the spirit of the girls who suffer from this condition.

Olivia was the strongest most determined girl you would meet. Although Rett Syndrome took away her voice it didn’t take away her desire to communicate. Her eyes became the window to her soul.

Olivia was so mischievous and so very loving her life was about love and laughter.

This is what we have to remember that behind the list of conditions there are girls.

Girls that want what we all desire.

To live life to the full.

To live a life not suffering from epilepsy, movement disorders, breathing abnormalities and so much more.

Help me make this happen.

Help me raise awareness of Rett Syndrome.

I hate Rett Syndrome with a vengeance but I love those girls fighting it everyday.

Help me make their future brighter.

More can be found out about this condition on the websites.

Cure Rett
Reverse Rett….
Girl Power 2 Cure

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Please share this post.

Seizures suck !!

Did you know that this week is National Epilepsy Week?

Its a week dedicated to raising awareness about Epilepsy.

I know a lot more about epilepsy than I wish and you know what?

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Its as simple as that!

I have mentioned before on here that Livvy suffered from seizures. They constantly plagued her life. At times she would have over 100 seizures a day.  They effected everything she did. her balance, her ability to walk, even her eating. We nearly lost her numerous times to her seizures.

Today many of my friends children suffer with seizures, their lives are scarred by this illness.

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Yet little is really known about epilepsy.

When asked many describe the image of a person shaking on the floor violently .This does happens but the thing is there are various types of seizures that are relatively unknown. Some are barely even visible.

Still they effect lives.

Did you know?

 

Crazy isn’t it.

So do me a favour today, pop over to the Epilepsy action site and learn more about this condition.

epliespsy thank you x

 

Running for our girls

I’m so excited and can’t wait to share this news with you all.

My late daughter Livvy has been chosen as one of the 195 girls to be honoured by Team Sparkle in the So Cal Ragnar Relay. 6 amazing women are running 195 miles for 195 girls with Rett Syndrome. “195 miles” that works out about 30- 35 miles each, can i just say OUCH.

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Livvy’s mile is number 171 and is being run by a Rett mama Allison Foley.

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As you can imagine I am super excited having Livvy honoured in this way it has certainly blessed my heart. But I’m also so happy to be part of this amazing fund-raising event dedicated to funding the research into curing the devastating condition Rett syndrome.

I am  seriously stoked to be part of this event.

So why am I telling you guys all this?

 Its simple I need your support.

I am hoping to raise $100 to support this amazing cause.

Help me, help Team Ragnar honour Livvy.

Seriously no donation is to small, it all goes to an amazing cause.

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Please check out Team Sparkle Facebook page and learn more about this amazing ladies.

Make a donation, please let them know its made in Livvy’s memory.

Also go check out Livvy’s Page over at Girl Power 2 cure, I am slightly bias about this charity as they have been strength to me in times of weakness and have given me comfort in times of sorrow. But more than that they give me opportunity to honour Livvy and to keep her memory alive by fighting alongside them against Rett syndrome.  To quote Kelly Butler from GP2C ” once a Rett mama always a Rett mama” I can’t tell you how much I needed those words.

So thats my exciting news for the day, lets support Team Sparkle as they support our girls.

Newlife- Making a difference

A number of years ago Alan and I were parents surviving on little or no sleep. This wasn’t due to the demands of a newborn as you would expect but because of our severely disabled daughter and her severe epilepsy.

Every night we faced the dreaded pounding of the cot sides as our daughter whacked her arms ravaged by a seizure.

We were in desperate need of a specialist bed but the words “not funded” were becoming the norm.

Well that was until the community nurse asked us if we had heard about a charity called Newlife Foundation for disabled children.

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Well we hadn’t but they soon became known to us as the ones who gave us our first night sleep in years.

So now ten years later when I was asked as a blogger if I wanted to go behind the scenes and learn more about the charity I jumped at the opportunity.

So this is me telling you about the amazing charity known as Newlife.

Since its beginning in 1991 Newlife have kept at their heart the needs of disabled children and their families.

Raising funds to support and advocate for disabled children and terminally ill children across the UK.

Newlife is rather unique its its fundraising “actually earning most of the funds needed by operating a successful recycling company which offers environmentally sound services to major retailers, manufacturers and brand holders from across the High Streets of the UK sf increasingly in Europe. All profits from this recycling company are donated to Newlife.”

My girls and I take advantage of this recycling company getting some great bargains.

Newlife are a fantastic charity and offer support and guidance with real compassion. After only spending a few hours with the staff I could see and feel the passion for what they do.

They have four key national activities.

Nurse Services

A free national helpline which supports and informs families. Its confidential and trusted. Nothing is too important or trivial to discuss with a Newlife nurse.

A Newlife nurse can help discuss the grants needed for essential equipment and progress those which may be funded straight from Newlife funds or help provide information of grants available nationally from other sources.

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The nurse service has provided families with a professional listening ear since its origins in 1993. Since 2004 the service has directly helped over 35,000 people at the number of families continue to grow.

I know I have spoken to friends who have disabled children who tell me that this service has been a lifeline for them. Even when they cannot physically help, their kindness and willingness to listen has really supported them. One friend told me that she was at rock bottom and it was a Newlife nurse that lifted her up.

Personally I think this is an incredible service and one I know is highly regarded in the disability community.

Equipment Services.

One of the biggest issues when raising a disabled child is the cost of equipment. This is a major area of a families life and can effect everyday. The constant battle to get what your child needs is something I am so aware of. The time needed for assessment through statuary services left us struggling every night for a number of years only to reach the end of the assessment to find that although they agree there is a need they do not have funding left us exhausted and in pieces.

This was when Newlife came to our rescue and to the rescue of over 7000 children nationwide.

I really want to state that the equipment I am talking about isn’t just added extras that would make our children’s life brighter. It is vital equipment that is essential to a disabled childs life.

These have included pain relieving beds, wheelchairs, communication and other aids.

Newlife grants have funded over £10 million in equipment changing the lives of disabled children and their families all over the UK.

We were one of the families that was helped right at the beginning. On my visit I found out that Olivia’s bed grant was number 147. I cannot describe in words the impact that having a bed that protected my little girl when she slept when she seizured made to us as a family. To be able to sleep without fear was such a gift to us. To able to sleep without hurting herself made such a difference to Olivia.

Newlife also offer an amazing ‘Just Can’t Wait Service’  this provides loan equipment to terminally ill children nationwide. This is an incredible service as it has allowed terminally ill children to be cared for at home rather than in hospice. As one who knows the importance of every second counts I know this loan scheme has really blessed many families.

Newlife also offer a ‘Play Therapy Pod’ scheme this is the free loan of specialist development toys for families who care for a disabled or terminally ill child. Each pod consists of a variety of specialist toys that suitable for the age and ability of the child. Some of the greatest teaching can be achieved through play, so again a fantastic service.

Medical Research

This was a something I was not aware that Newlife were part of so I was extremely surprised and encouraged to learn that over the years Newlife has funded over 220 research projects at over 50 leading institutions around the UK funding around 15 million in research.

Can I get a collective WOW.

Chatting to the staff from Newlife it was evident that they were really passionate about this area hoping that one day grants won’t be needed as treatment and cures for disabilities will be so advanced.

I know I too have this hope.

Let me show you some numbers

15 million invested in child health medical research

70 young doctors directly supported through investment in research training, leading to improved child care and research.

50 genes identified, through Newlife research, aiding diagnosis and treatment.

220 grants funded for pioneering research.

59 The number of leading institutions where Newlife has funded medical research.

How amazing are Newlife !!

Campaigns & Awareness

Raising a disabled child is hard work there is no way to hide from that but at times what makes it worse is the constant battles we face just to get the help that we need. Newlife listen to parents and carers and take these messages, these struggles to the policy makers through their campaigns and awareness activities. They have become the voice of the families on important issues and they have helped to overcome the isolation many face.

As a leading charity Newlife are often consulted by Government on major issues around healthcare, services and policy. They also liase with local authorities and local health care providers to ensure policies regarding provision are fair and reasonable. The excellent relationships they have with these professional bodies allow them to raise awareness about the needs of children and their families.

 

Seriously I attended my visit to Newlife believing I knew most of what they did as a charity but honestly I hadn’t a clue. The work and the people they support is simply marvellous.

On my visit to their superstore the staff at Newlife asked me for two things.

Firstly and in their words ‘most importantly they wanted me to raise awareness of what services they offer. They honestly wanted more families to be informed about how they can help them.

Secondly like every charity they need our help. They need people to come forward and support the charity and help change the lives of disabled children and their families.

Newlife receive no government funding so every equipment grant, every research grant and every policy change has been funded by their supporters. So obviously the more support they get the more difference they can make in the lives of children and their families.

They have a great number of ways you can support them.

Visit the Newlife stores

Run a marathon

Hold a cake party

Host one of Newlife’s Sparkle parties

Be part of Newlife’s annual Santa Dash

Leave a legacy gift.

Visit the Newlife’s Facebook page for more ideas on how to get involved.

There are seriously so many ways you could get involved. Get your workplace on board, your school.

Every penny raised makes a difference, I know this personally. Newlife gave our family peace of mind. We could finally get some sleep knowing that Olivia was safe from harm. I cannot stress how much that meant to us.

Newlife is an incredible charity and although this is a rather a long post I haven’t touched on all they have to offer.

Over the next few weeks I will be continuing with a series of blog post regarding Newlife. I want to share some of the fun ways that you can support them.

So stay tuned there is more to come.

Lastly I want to leave you with a short video that really shows how much Newlife changed our lives.

 

 

 

Nobel Laureates 2013

I was so excited to read this today.

Thomson Reuters Predicts 2013 Nobel Laureates

Why you may ask.

Well its simple there in PHYSIOLOGY or MEDICINE category is Dr Adrian P. Bird a Buchanan Professor of Genetics at the University of Edinburgh Scotland.

This man may not be known to you but for Rett Syndrome parents everywhere this man gave us hope.

In 2007 it was in this lab that researchers were able to demonstrate that Rett Syndrome is hypothetically reversible.

Hope.

It was and is because of the tireless research and expertise by Dr Adrian Bird and others like him that the cure is now not just a dream but is within our grasp.

I  had the honour of  briefly meeting Dr Bird a few years ago and was impressed not just by his commitment to his research but also by his dedication to the plight of our girls. His compassion to me when I told him of the loss of Livvy will always stay with me.

The winners of the above award will be announced on Monday. I pray that Dr Adrian Bird receives the recognition he deserves. I also pray that this would bring Rett research to the forefront of  the scientific community.

Whatever the outcome Dr Bird is my hero already.

 

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A Sisters Heart

Dear everyone

Please help me and my family to find a cure for this terrible disease called Rett syndrome.

Four years ago my sister Olivia aged nine passed away by this horrible disease. Olivia was my best friend she used to drop her toys on the floor on purpose so I would go to pick them up ,then she would yank my hair and laugh but I didn’t care because she was my sister and I miss her so much.

I wish I could see her smile and give her a huge hug so badly.

Earlier on my mom told me that her friends daughter passed away from Rett syndrome she went to sleep and never woke. This is the same as my sister.

Each day more girls are being born with this syndrome.

Now my mom’s friends daughter was only five and even though we had Olivia for nine whole years it doesn’t seem enough.

The other day I told my mom that please don’t take this the bad way but in a way I’m happy Olivia died because the fact is she is no longer in pain. I worry all the time of the pain the girls are in. Livvy suffered so much.

Please help us as we try and raise funds to pay for the research into the cure for Rett Syndrome.

Please find it in your heart to make a donation no matter how much it is you can help save somebody’s life.

If you see or hear that another girl has died has died of Rett syndrome i ask yourself to put yourself in that girls families shoes. Can you imagine how you would be feeling ,how your heart would be broken?

Please please think of others today and help us fight against Rett Syndrome.

Any donation would be amazing.

My mom suggested to make a donation to Rett syndrome research trust instead of sending Christmas cards.

I asked for donations instead of Christmas presents but mom said only one.

Please please help stop this horrible syndrome. I miss Livvy so much and don’t want another brother or sister to cry like I do.

To donate visit the website http://www.reverserett.org.uk/

Anything will be received with such love from our family and from our hearts up above.

Thank you

Brodie xxx

*this was written by my 11 year old daughter, I only added the link.

The Thief In the Night

October sees the start of a month long campaign to raise awareness for a condition called Rett Syndrome.

Rett Syndrome is a debilitating disorder which most often strikes previously healthy little girls just after they have learned to walk and say a few words and begins to drag their development backwards.

As the cascade of Rett symptoms descends, girls lose acquired skills, normal movement and speech. Girls are left unable to communicate or use their hands to hold, carry or manipulate objects.

Over time, girls who have learned to walk often lose that ability as well. Loss of motor control sets in, essentially locking these girls into bodies that won’t work, leaving them without the ability to make purposeful movements.

Complications are many, including:

  • Disordered breathing
  • Severe digestive problems
  • Difficulty eating, chewing and swallowing
  • Orthopaedic abnormalities such as scoliosis and fragile bones
  • Disrupted sleep patterns
  • Extreme anxiety
  • Seizures
  • Impaired cardiac and circulatory function
  • Parkinson-like tremors
  • Sudden and unexplained death

 At this time there is no cure for Rett Syndrome.

 

It is a disease which I hate with a vengeance. The reason behind my hate is simply this; it stole my daughter from me twice.

Let me explain…….

On May 5th 1999 I gave birth to a beautiful baby girl, she had the bluest eyes and cutest blond curly hair you have ever seen. We named this beauty Olivia.

Apart from a few feeding issues the doctor proclaimed my daughter to be perfect, as if I needed to be told. My daughter was perfection!

Olivia became known as Livvy and let me tell you she was mischievous from day one, a cheeky smile and a twinkle in her eyes that melted the coldest hearts.

Livvy was everywhere and into everything, she lived life at warp speed. I would turn my back for a second and find her climbing up the stairs, over the furniture or even helping herself out of the treats cupboard.

Her constant mom mom mom and dad dad dad used to drive me insane, if only I had known then what was around the corner I would have recorded, cherished everyone of those precious words. A few months later I would be on my knees praying, begging God to allow me to hear her call my name one more time.

It wasn’t to be, like a thief in the night Rett Syndrome came and stole our daughter away.

Loss of eye contact, autism, seizures, breathing abnormalities, tremors, Rett syndrome plagued my beautiful baby girl.

I find the human spirit incredible, the amount of pain you face yet somehow it restores itself. Of course you are never the same, but you move forward, living life, enjoying life.

Rett Syndrome had changed our world but it wasn’t going to be allowed to destroy it. Not if the fighting spirit of our daughter had anything to do with it. Life was for living and my goodness Livvy was determined to live it. Rett syndrome was what she had not who she was.

We had faced the worst and survived it. Well that’s what we believed until that fateful morning of November 7th 2008. The thief in the night had struck again this time it took our precious daughter from us for good.

Our hearts broke into millions of pieces, our world, our lives were destroyed and devastated words don’t come close to the pain that ravaged us.

How we survived I don’t know, it’s still a mystery today how our bodies carried on with so much pain. Broken hearts, broken spirits.

I have no answers.

What I do know is this, while there is breathe left in my body, I will fight for the cure of Rett syndrome.

The thief in the night is stealing too many of our children, it needs to be stopped and its needs to be stopped now.

Together we stand a chance.

Recent breakthroughs in medical research are making the dream for a cure a reality. But like most things in life there is a cost.

Join me and many others in the fight for the cure of this evil disease. Make a donation, hold a fund raiser and help raise awareness.

Together we can be the hope of millions of girls everywhere.

Let’s lock up this thief for eternity.

Please join me in supporting Rett Syndrome Research Trust UK.

I thank you in Livvy’s name and her memory.