Do you know how it feels when you have twins and you are told they wont live beyond there 8 months birthday? Do you know how it feels when you have twins and you are told they wont live beyond there 8 months birthday?
Kennedy’s Life Saving Meds – Paris It was a dream come true when we was told that for our first children “you are having a boy... Do you know how it feels when you have twins and you are told they wont live beyond there 8 months birthday?

Kennedy’s Life Saving Meds – Paris

It was a dream come true when we was told that for our first children “you are having a boy and girl” Dreaming begins thinking of there first day at school, mini disco with dad dancing and of course, football and weddings!

Then what do you say when a doctor tells you that both your babies, a twin boy and girl will not live beyond there 8 month birthday?  your world comes crashing down around you and begin the traumatic grieving process from that second onwards, even though they are still laying in your arms looking at you with the worlds cutest smile.

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Our amazing babies, Karter and Kennedy where diagnosed with Spinal Muscular Atrophty Type 1 at the age of 3 months old.  This cruel disease causes severe muscle weakness – impacting on a babies ability to feed, move any muscle, talk, play and of course breath. Kennedy sleeps with a ventilator to aid breathing at night. However the brain is still fully functional.  Allowing you to know what is happening around you – but as this story goes on you will learn there is hope and having that brain power along with will and fighting spirit (and a ton of it) gives hope, inspiration and opportunity – a miracle is born!

Our brave son Karter lost his battle at the age of 5 months – we miss and think of our little man all day, every day! We believe he is a hero, who went early to help save his little sister Kennedy and prolong her life.   Kennedy is an inspiration, people say Kennedy is here because of her parents but let me tell you – Kennedy saved our life,  not the other way around. This is only one of many reasons why Kennedy deserves the life saving and quality of life enhancing drug called Nusinersen.

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Ever since the twins where born in 2012 we have followed closely a clinical trial for SMA. First starting in the USA and then spread into Europe.  This was the first ever drug to help minimise and show results of dramitic improvement for the symptoms caused by this evil disease! In 2015 this drug was named as Nusinersen and because of its successful results with minimal risk was granted as an Easy Access Programme (EAP) that could legally be administered to all SMA Type 1 patients across the globe, including the UK!

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This drug would not just slow down this progressive disease, there is also evidence from other children who have taken part that new milestones can be achieved. From talking, sitting and saying those presious words every parent treasures most – mummy or daddy!! It really is potentially that much of a dramatic change!!!

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Sounds like good news but there is a HUGE downside, this drug has no NHS funding or provision. In short this means that Kennedy cannot potentially access this drug in the UK for upto 12 months minimum. In the life of SMA this is to long and she may not make it, it would be inhumain for Kennedy to lose out on treatment becuase of NHS politics in the UK.

Therefore we are asking for your help to raise funds so our miracle daughter can access this special drug in Paris.  The treatment in Paris cold be available within 4 weeks but is not covered by the NHS so a heavy cost is involved!

Kennedy is 5 years old this year and has defyed many many odds against her to reach this milestone.!! She has overcome Flu A when she was told she wouldnt, she has beaten Pneumonia , and a perforated bowel with fight and spirit – the list goes on. She is a real life Xena – Warrior Princesss! Kennedy has a fantastic quality of life and deserves to continue that quality of life. She has travelled to Spain on 8 occasions when we was told abroad travel was impossible for Sma babies, visited the zoo, swam in the Mediterranean , been on a boat/train/aeroplane and even danced around with Johnny Depp.  All things EVERY parent should experience, small things like little words and flicking her Ipad with her fingers is no easy task but Kennedy does this with gusto.

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Your donation will help an Earth Angel continue the dream of life, that she treasures and never takes for granted! Our aim is the same – to save and improve life as the opportunity is right in front of us.

Your urgent attention is appreciated! We are proud parents who love our baby girl.

Just to highlight that if any additional money is raised once treatment is finished in Paris we will be donating this to TREAMSMA.

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Help spread the word!

https://www.gofundme.com/kennedys-life-saving-meds-paris

Obinna Onyia

  • Lesedi Bapela

    2017-06-09 #1 Author

    That’s a horrible disease i wouldn’t wish on any innocent child. God bless all the babies with the disease and i hope they all pull through.

    Reply

  • Alexis Rivers

    2017-06-09 #2 Author

    Omg ,I Would Be So Hurt . But ,Only God Has The Last Say So .

    Reply

  • Jyasia

    2017-06-09 #3 Author

    Oh this is beyond heartbreaking 😱

    Reply

  • Sabrina

    2017-06-09 #4 Author

    Awwn I Hope All The Babies With Any Horrible Disease Gets Better 💗.

    Reply

  • Bright White

    2017-06-09 #5 Author

    After reading this sad article, I just couldn’t imagine the traumatic experience the parent would be going through..
    I really don’t wish this for my enemy….

    Reply

  • Shaquila williams

    2017-06-09 #6 Author

    I hope all is well with the babies wouldn’t wish it on any one

    Reply

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