Al + Andy's run for Alfie
Donation protected
Hi everyone, I'm Rachael - Alfie's mother.
This is just a little bit of infomation about Alfie and his condition. Alfie was always a poorly baby - in and out of hospital. At the age of two and half months he developed bronchitis. He had seizures a week later including a 20 minute seizure which was terrifying as you can imagine.
By 6 months old I had concerns that Alfie wasn't developing normally, his fine motor skills were developing normally however his gross motor skills and his speech were not, he couldn't sit unaided or babble. Between the age of 6 months and 15 months Alfie has had to have a lot more tests including genetic tests. This has included a lot of visits to hospital and overnight stays. Alfie was found to have 1p36.33 deletion chromosome disorder at the age of 15 months.
The things this could entail are:- severe intellectual disability - most effected do not speak and many have behaviour problems. Most have structural abnormalities of the brain, seizures, low muscle tone, swallowing difficulties, facial deformities, vision problems, hearing problems, abnormalities of the skeleton, heart, gastrointestinal system, kidneys or genitalia.
Alfie now is under the care of a paediatrician, physiotherapist, ear, nose and throat doctors, speech and language team, ophthalmology team and geneticist.
We are taking Alfie to a place in somerset called Brainwave on the 14th and 15th July this is why we and others are fundraising as Brainwave are not run by the NHS and we have to pay towards the cost of the treatment every time he goes. After his first visit Brainwave will decide whether to see Alfie every 4 or 6 months for the foreseeable future. Brainwave are an independent organisation that help children with all kinds of disabilities and help children reach their potential in life.
We are hoping with the help and support from brainwave that Alfie may one day be able to walk and maybe say a few words. We are so overwhelmed that Al and Andy are doing this to support Alfie on his very long journey. We would like to say a huge thankyou to both of them.
This is just a little bit of infomation about Alfie and his condition. Alfie was always a poorly baby - in and out of hospital. At the age of two and half months he developed bronchitis. He had seizures a week later including a 20 minute seizure which was terrifying as you can imagine.
By 6 months old I had concerns that Alfie wasn't developing normally, his fine motor skills were developing normally however his gross motor skills and his speech were not, he couldn't sit unaided or babble. Between the age of 6 months and 15 months Alfie has had to have a lot more tests including genetic tests. This has included a lot of visits to hospital and overnight stays. Alfie was found to have 1p36.33 deletion chromosome disorder at the age of 15 months.
The things this could entail are:- severe intellectual disability - most effected do not speak and many have behaviour problems. Most have structural abnormalities of the brain, seizures, low muscle tone, swallowing difficulties, facial deformities, vision problems, hearing problems, abnormalities of the skeleton, heart, gastrointestinal system, kidneys or genitalia.
Alfie now is under the care of a paediatrician, physiotherapist, ear, nose and throat doctors, speech and language team, ophthalmology team and geneticist.
We are taking Alfie to a place in somerset called Brainwave on the 14th and 15th July this is why we and others are fundraising as Brainwave are not run by the NHS and we have to pay towards the cost of the treatment every time he goes. After his first visit Brainwave will decide whether to see Alfie every 4 or 6 months for the foreseeable future. Brainwave are an independent organisation that help children with all kinds of disabilities and help children reach their potential in life.
We are hoping with the help and support from brainwave that Alfie may one day be able to walk and maybe say a few words. We are so overwhelmed that Al and Andy are doing this to support Alfie on his very long journey. We would like to say a huge thankyou to both of them.
Organizer
Andy Wells
Organizer
