Annabelle’s independence
Donation protected
Help get Annabelle Rose's moving with essential physio equipment.
23.12.16 was the day we received the devastating and life changing news that our baby had a rare life limiting condition SMA1. "It is a genetic degenerative condition" they said and "we don’t expect her to last past 18 months".
Our beautiful baby girl was 9 months already…how on earth do we process this?
She won’t walk... she won’t eat... she won’t talk…she won’t live.
After a 6 week stint in hospital with tonsillitis, bronchitis and pneumonia our perfectly healthy baby was different. VERY floppy, could no longer sit up, move her legs, arms or hold her head up anymore. Her breathing was so laboured and she now has to go on breathing support at night... And they said it was going to get worse than this – she can stop breathing at any minute.
The very next day on Christmas Eve, we found a press release that there was promise of a new drug potentially so successful it was coming off of clinical trails in America and hopefully heading to Europe.
After two very dark months that I can only describe as a blur, we received a phone call from Great Ormond Street Hospital in February to say that our beautiful Annabelle has been selected to be the first baby girl in the UK to receive the drug. We couldn’t believe it, we wanted this yesterday and had been praying everyday…now it is actually happening.
The drug is called Nusinersin (Spinraza) and is a lumber puncture injection into the spine which creates the proteins Annabelle's faulty SMA genes are not producing. After the 4 loading injections she will have one every 4 months for life... or at least until they figure out a miracle cure.
Miraculously, we have seen head control and some pressure and power returning in her legs, she now attempts to roll and overall has more movement especially in water; she kicks her legs like the average baby under water. GOSH have also told us she now has 25% more movement than she did in February…we are over the moon. But Annabelle's journey is still long.
Aside from struggling with this awful diagnosis, we have also struggled with our community, 18 week waiting lists and the general lack of urgency…we want to strike while the iron is hot so to speak and while Annabelle is a miracle and showing signs of improvement rather than the decline we were told…it is even more so important now for Annabelle to have access to the correct physiotherapy and equipment whenever she needs it.
Through a mixture of self-funding and other's generosity, we built Annabelle's hydrotherapy pool, but we have learned that the price to give Annabelle a life she deserves, comes at a huge cost and is a never ending outlay of money and far exceeds the cost of the pool.
We have to pay privately for physio sessions (@£70 each) as our local community are so stretched that Annabelle can not bee seen regularly by our community team.
We have to pay for equipment such as Powerchairs (£15k plus), walkers (@£18K) and trikes (@£1600k) because the community does not fund such equipment as these are seen as fun and not imperative.
Annabelle has been incredibly lucky to have been given a Wizzybug from designability (an incredible charity) on a 3 year loan scheme. She has had wizzy since she was 1 and loves it so much and we can not believe her control over the machine, it is like an extension of her personality the way she moves it around she literally communicates throughout it. As our Wizzy bug loan scheme is due to come to an end we are looking into the next power chair which needs to grown with her and give her all round more power now as she gets older. Ultimately Annabelle relies on a power chair to give her fun, freedom and independence to go where she wants to go, without it she can not move and relies on us to move her and position her constantly everyday.
This is why we have the need for a go fund me page to give Annabelle the equipment to help her reach her full potential. This for Annabelle will be life changing.
Despite everything...we are still dreaming big that with this drug and daily physio, hydrotherapy and the right equipment she can eventually sit up unaided, even crawl then maybe walk but ultimately all we really want is to lengthen her life and have the best available to her when she needs it.
We need any help we can for our beautiful little girl. She is so tenacious, always smiling and has been so strong to get to where she has done so far. We just need that extra push and prayers to help us further.
This is Annabelle Trailing the Koala...didnt do too bad for her first time.
23.12.16 was the day we received the devastating and life changing news that our baby had a rare life limiting condition SMA1. "It is a genetic degenerative condition" they said and "we don’t expect her to last past 18 months".
Our beautiful baby girl was 9 months already…how on earth do we process this?
She won’t walk... she won’t eat... she won’t talk…she won’t live.
After a 6 week stint in hospital with tonsillitis, bronchitis and pneumonia our perfectly healthy baby was different. VERY floppy, could no longer sit up, move her legs, arms or hold her head up anymore. Her breathing was so laboured and she now has to go on breathing support at night... And they said it was going to get worse than this – she can stop breathing at any minute.
The very next day on Christmas Eve, we found a press release that there was promise of a new drug potentially so successful it was coming off of clinical trails in America and hopefully heading to Europe.
After two very dark months that I can only describe as a blur, we received a phone call from Great Ormond Street Hospital in February to say that our beautiful Annabelle has been selected to be the first baby girl in the UK to receive the drug. We couldn’t believe it, we wanted this yesterday and had been praying everyday…now it is actually happening.
The drug is called Nusinersin (Spinraza) and is a lumber puncture injection into the spine which creates the proteins Annabelle's faulty SMA genes are not producing. After the 4 loading injections she will have one every 4 months for life... or at least until they figure out a miracle cure.
Miraculously, we have seen head control and some pressure and power returning in her legs, she now attempts to roll and overall has more movement especially in water; she kicks her legs like the average baby under water. GOSH have also told us she now has 25% more movement than she did in February…we are over the moon. But Annabelle's journey is still long.
Aside from struggling with this awful diagnosis, we have also struggled with our community, 18 week waiting lists and the general lack of urgency…we want to strike while the iron is hot so to speak and while Annabelle is a miracle and showing signs of improvement rather than the decline we were told…it is even more so important now for Annabelle to have access to the correct physiotherapy and equipment whenever she needs it.
Through a mixture of self-funding and other's generosity, we built Annabelle's hydrotherapy pool, but we have learned that the price to give Annabelle a life she deserves, comes at a huge cost and is a never ending outlay of money and far exceeds the cost of the pool.
We have to pay privately for physio sessions (@£70 each) as our local community are so stretched that Annabelle can not bee seen regularly by our community team.
We have to pay for equipment such as Powerchairs (£15k plus), walkers (@£18K) and trikes (@£1600k) because the community does not fund such equipment as these are seen as fun and not imperative.
Annabelle has been incredibly lucky to have been given a Wizzybug from designability (an incredible charity) on a 3 year loan scheme. She has had wizzy since she was 1 and loves it so much and we can not believe her control over the machine, it is like an extension of her personality the way she moves it around she literally communicates throughout it. As our Wizzy bug loan scheme is due to come to an end we are looking into the next power chair which needs to grown with her and give her all round more power now as she gets older. Ultimately Annabelle relies on a power chair to give her fun, freedom and independence to go where she wants to go, without it she can not move and relies on us to move her and position her constantly everyday.
This is why we have the need for a go fund me page to give Annabelle the equipment to help her reach her full potential. This for Annabelle will be life changing.
Despite everything...we are still dreaming big that with this drug and daily physio, hydrotherapy and the right equipment she can eventually sit up unaided, even crawl then maybe walk but ultimately all we really want is to lengthen her life and have the best available to her when she needs it.
We need any help we can for our beautiful little girl. She is so tenacious, always smiling and has been so strong to get to where she has done so far. We just need that extra push and prayers to help us further.
This is Annabelle Trailing the Koala...didnt do too bad for her first time.
Organizer
Michelle Thomas
Organizer
England