Alfie Arthur George Gunn
Donation protected
Alfie is a 8 month old baby who has a big sister and a very loving Mummy and Daddy. He was born with a rare congenital genetic disorder called 1p36 deletion syndrome (also known as monosomy 1p36) this disorder is characterized by moderate to severe intellectual disability, delayed growth, hypotonia, seizures, limited speech ability, malformations, hearing and vision impairment, and distinct facial features.
Alfie has spent more time in hospital than at home and is currently at Southampton general hospital in intensive care after being admitted on 2nd February with heart failure, he has had three heart attacks since his admission and due to lack of profusion (starvation of oxygen) Alfie suffered hypoxia (damage to the brain) and contracted NEC which resulted in him having his large intestine removed and a ileostomy fitted.
He’s had two heart surgeries the first being at 9 weeks old and involved a PA band fitting, the second being after the three heart attacks to remove the band and close a large VSD. During the last surgery Alfie’s the vocal cord nerve got damaged and has left him with bilateral vocal cord palsy. If his vocal cords stay paralysed he may not be able to eat or drink and have to be fed via a feeding tube continuously and also have to have a trachea fitted to keep his airways open.
Along with this Alfie has uncontrolled epilepsy and can have up to 100 seizures in a day.
With everything Alfie has been through he remains a very happy content baby, enjoys listening to music, playing with his toys and he loves cuddles with anyone willing to give them.
He is a little fighter, a true superhero!!
What are we raising money for . . . ?
Epilepsy is a brain condition which means that the sufferer tends to have seizures. Anyone can suffer a seizure, however this doesn’t make them epileptic. Epilepsy is diagnosed after a number of seizures and doctors suspect that more could happen. It can start at any age and comes in a number of forms – some last a limited time whereas other forms are lifelong. It is fairly common with an estimated 60000 sufferers in the UK.
Epileptic seizures are the result of a sudden intense burst of electrical energy in the brain, leading to disruption of how the brain works thus resulting in an epileptic seizure. Seizures come in a range of types, and the results of a seizure depends on the part of the brain it affects.
Evidence has proven that use of our multi- sensory equipment for individuals with epilepsy can have a soothing effect. For those regularly spending consistent amounts of time in a sensory controlled environment, there can even be a reduction in the quantity or severity of the seizures.
We are wanting to raise funds for Alfie to have his own sensory equipment in his bedroom for when he comes home.
How are we going to do it . . . . ?
I am going to complete the hero WOD ( workout of the day ) Murph, every day of the month of June at Sarum Crossfit who have kindly agreed.
What is Murph?
In case you’re unfamiliar, “Murph” is a classic CrossFit workout known as a Hero WOD. Hero WOD’s are made by CrossFit to honor the men and women that have fallen in the line of duty. This one is specifically to honor Navy Lieutenant Michael Murphy, who was killed in action in Afghanistan on June 28th, 2005.
Murph
1 mile Run
100 Pull-Ups
200 Push-Ups
300 Air Squats
1 mile Run
*With a 7kg Vest
Murph is considered to be one of the hardest WODS for CrossFit and will be a real challenge to complete everyday, usually it takes me about 2 -3 days to recover after completion. I wanted to use a "Hero" WOD as Alfie is our own little HERO!!
Thank you for taking the time to read Alfies's story and anyone who would like to come down and complete the mile runs with me are more than welcome.
Alfie has spent more time in hospital than at home and is currently at Southampton general hospital in intensive care after being admitted on 2nd February with heart failure, he has had three heart attacks since his admission and due to lack of profusion (starvation of oxygen) Alfie suffered hypoxia (damage to the brain) and contracted NEC which resulted in him having his large intestine removed and a ileostomy fitted.
He’s had two heart surgeries the first being at 9 weeks old and involved a PA band fitting, the second being after the three heart attacks to remove the band and close a large VSD. During the last surgery Alfie’s the vocal cord nerve got damaged and has left him with bilateral vocal cord palsy. If his vocal cords stay paralysed he may not be able to eat or drink and have to be fed via a feeding tube continuously and also have to have a trachea fitted to keep his airways open.
Along with this Alfie has uncontrolled epilepsy and can have up to 100 seizures in a day.
With everything Alfie has been through he remains a very happy content baby, enjoys listening to music, playing with his toys and he loves cuddles with anyone willing to give them.
He is a little fighter, a true superhero!!
What are we raising money for . . . ?
Epilepsy is a brain condition which means that the sufferer tends to have seizures. Anyone can suffer a seizure, however this doesn’t make them epileptic. Epilepsy is diagnosed after a number of seizures and doctors suspect that more could happen. It can start at any age and comes in a number of forms – some last a limited time whereas other forms are lifelong. It is fairly common with an estimated 60000 sufferers in the UK.
Epileptic seizures are the result of a sudden intense burst of electrical energy in the brain, leading to disruption of how the brain works thus resulting in an epileptic seizure. Seizures come in a range of types, and the results of a seizure depends on the part of the brain it affects.
Evidence has proven that use of our multi- sensory equipment for individuals with epilepsy can have a soothing effect. For those regularly spending consistent amounts of time in a sensory controlled environment, there can even be a reduction in the quantity or severity of the seizures.
We are wanting to raise funds for Alfie to have his own sensory equipment in his bedroom for when he comes home.
How are we going to do it . . . . ?
I am going to complete the hero WOD ( workout of the day ) Murph, every day of the month of June at Sarum Crossfit who have kindly agreed.
What is Murph?
In case you’re unfamiliar, “Murph” is a classic CrossFit workout known as a Hero WOD. Hero WOD’s are made by CrossFit to honor the men and women that have fallen in the line of duty. This one is specifically to honor Navy Lieutenant Michael Murphy, who was killed in action in Afghanistan on June 28th, 2005.
Murph
1 mile Run
100 Pull-Ups
200 Push-Ups
300 Air Squats
1 mile Run
*With a 7kg Vest
Murph is considered to be one of the hardest WODS for CrossFit and will be a real challenge to complete everyday, usually it takes me about 2 -3 days to recover after completion. I wanted to use a "Hero" WOD as Alfie is our own little HERO!!
Thank you for taking the time to read Alfies's story and anyone who would like to come down and complete the mile runs with me are more than welcome.
Organiser
Shellie-Jane Machin
Organiser
