Selah’s Life Changing Surgery
Don protégé
Our close friend’s 9 year old daughter Selah, has recently very sadly been diagnosed with Chiari 1 Malformation and Neuro-Cranio-Vertebral Syndrome (Filum Disease). This is a rare and complex condition, causing numerous neurological and structural problems related to her brain and spine.
Heartbreakingly, this condition has dramatically affected Selah’s mobility and has meant that a once very active, vibrant child, who has a passion for dancing and singing, has to now greatly depend upon a wheelchair to get around. The condition has left her suffering with constant pain, which sometimes becomes excruciating.
After struggling for about 5 weeks to get referrals to specialised NHS neurosurgeons, when the specialists eventually viewed Selah’s MRI’s they felt she wouldn’t be helped by a decompression brain surgery sometimes offered for her condition. Therefore, very sadly, Selah’s family have come to realise that the treatment that she so desperately requires is not available on the NHS.
However, her parents were determined to keep looking for answers. With a lot of research, they have found a specialised Chiari Research Institute in Barcelona who have been using a much less invasive, yet highly successful surgery for many people with similar symptoms to Selah.
Selah has undergone various different scans and tests and her family have now had confirmation from neurosurgeons that she is a suitable candidate for this treatment. She has been seeing specialist doctors since she was 5 years old regarding other symptoms, which they now realise are related to the condition and may also be helped by the surgery.
Their hope is that they can raise enough funds to be able to take Selah over to Barcelona, in order for her to have this life changing treatment, restoring her health and giving her back her mobility.
This will be a private surgery not covered by the NHS, costing over £20,000 ($26,000), plus travelling costs to and from Barcelona. They are currently looking into ways of trying to raise this money themselves, but we would very much like to help them in any way that we can, which is why we have set up this GoFundMe page.
Selah is scheduled to see the Doctors in Barcelona on October 1st, in the hope that surgery can commence the following day.
I know that any donations will be deeply appreciated by Selah’s family. Let’s help to give this little girl her life back!
For more explanation about the condition and the unique approach they take at the Institute see:
https://institutchiaribcn.com/en/diseases-we-treat/arnold-chiari-syndrome/
Heartbreakingly, this condition has dramatically affected Selah’s mobility and has meant that a once very active, vibrant child, who has a passion for dancing and singing, has to now greatly depend upon a wheelchair to get around. The condition has left her suffering with constant pain, which sometimes becomes excruciating.
After struggling for about 5 weeks to get referrals to specialised NHS neurosurgeons, when the specialists eventually viewed Selah’s MRI’s they felt she wouldn’t be helped by a decompression brain surgery sometimes offered for her condition. Therefore, very sadly, Selah’s family have come to realise that the treatment that she so desperately requires is not available on the NHS.
However, her parents were determined to keep looking for answers. With a lot of research, they have found a specialised Chiari Research Institute in Barcelona who have been using a much less invasive, yet highly successful surgery for many people with similar symptoms to Selah.
Selah has undergone various different scans and tests and her family have now had confirmation from neurosurgeons that she is a suitable candidate for this treatment. She has been seeing specialist doctors since she was 5 years old regarding other symptoms, which they now realise are related to the condition and may also be helped by the surgery.
Their hope is that they can raise enough funds to be able to take Selah over to Barcelona, in order for her to have this life changing treatment, restoring her health and giving her back her mobility.
This will be a private surgery not covered by the NHS, costing over £20,000 ($26,000), plus travelling costs to and from Barcelona. They are currently looking into ways of trying to raise this money themselves, but we would very much like to help them in any way that we can, which is why we have set up this GoFundMe page.
Selah is scheduled to see the Doctors in Barcelona on October 1st, in the hope that surgery can commence the following day.
I know that any donations will be deeply appreciated by Selah’s family. Let’s help to give this little girl her life back!
For more explanation about the condition and the unique approach they take at the Institute see:
https://institutchiaribcn.com/en/diseases-we-treat/arnold-chiari-syndrome/
Équipe de collecte de fonds (3)
Lucy Law
Organisateur
Rebecca Boke Neely
Bénéficiaire
Jennie Corden
Team member