Malita’s Voice
Donation protected
Hello all, thank you for visiting Malita’s page.
We are trying to raise money for a piece of equipment called an Eye Gaze which will enable our beautiful daughter to communicate with us through the use of eye movement. Malita is completely non-verbal due to her Cerebral Palsy and it would mean the absolute world for her to communicate with us.
A little bit about Malita.
Malita is an amazing, happy, and bubbly little girl. However when she was born there were complications. After a fairly normal labour Malita was showing signs of distress during delivery. As Malita was born she was not breathing and showing signs of long term oxygen deprivation. Malita was immediately put on oxygen and revived in the delivery room, next to us. Due to the severity of her condition, she was taken by emergency ambulance to Southampton Neonatal Unit, where they have far more specialist care.
At Southampton NU she went through a process called ‘cooling’. This is a treatment whereby she was wrapped in cooling pads, creating similar effects to hypothermia, reducing the body temperature. This process does not reverse any damage but helps reduce any further harm to the baby. When a baby suffers from lack of oxygen there is a build of acid in the blood which is what causes the damage and this cooling process helps reduce any further damage that acid build up may cause. Malita did amazing with this treatment, had no further complications and we managed to hold her for the first time a few days later.
She then continued to be under care of Southampton NU for a further 7 days. During this time, Malita under went several tests, including EEGs, CAT scans and an MRI. These showed significant damage to 3 key areas of her brain, one including that which controls motor function! At this time they were unable to tell us what this would mean for Malitas future! After all the necessary test were completed, Malita was moved back to Basingstoke NU to continue her new born care where we were released a few days later, with several upcoming hospital visits.
After being discharged from care, we tried to go about life with a new born as normally as possible, but it was clear that Malita was going to be unique from others. There were constant hospital visits, medical conversations and checks on Malita progress.
Malita was clearly a distressed baby, which was so difficult to manage but we were so thankful she was even here, we did all we could. At around 6 months we officially received the diagnosis of Quadriplegic Cerebral Palsy (meaning it affects the whole body). This news was absolutely heart breaking and life has not been straight forward since!
Looking at life today, Malita has to do daily physio, has very low weight, is purée fed for every meal and has very very limited independence and sees what feels like every childhood medical professional there is! However, we are very lucky as she attends an amazing Special Needs School where she is well supported.
On a brighter note and where the Eye Gaze comes in is due to the fact that Malita is bright and cognitively able. Unfortunately, as Malitas CP affects her whole body, including her arm and hand movements, she is unable to use any form of sign language, even very basic movements, she can not perform. In addition, her condition also means she is unable to control her oral movements to talk to us.
Malita has sooo much to say and wants to be like any other toddler but being non-verbal is limiting her life in so many ways, ways I would never even have thought of! An Eye Gaze would enable her to communicate with us effectively, from telling us what she actually wants for dinner, playing silly games with her little brother to explaining why she is upset or even when she isn’t feeling well. It would be an absolute life changer, not just for Malita but for us a family and everyone who knows and works with her.
Thank you very much for taking the time to read our story xx
We are trying to raise money for a piece of equipment called an Eye Gaze which will enable our beautiful daughter to communicate with us through the use of eye movement. Malita is completely non-verbal due to her Cerebral Palsy and it would mean the absolute world for her to communicate with us.
A little bit about Malita.
Malita is an amazing, happy, and bubbly little girl. However when she was born there were complications. After a fairly normal labour Malita was showing signs of distress during delivery. As Malita was born she was not breathing and showing signs of long term oxygen deprivation. Malita was immediately put on oxygen and revived in the delivery room, next to us. Due to the severity of her condition, she was taken by emergency ambulance to Southampton Neonatal Unit, where they have far more specialist care.
At Southampton NU she went through a process called ‘cooling’. This is a treatment whereby she was wrapped in cooling pads, creating similar effects to hypothermia, reducing the body temperature. This process does not reverse any damage but helps reduce any further harm to the baby. When a baby suffers from lack of oxygen there is a build of acid in the blood which is what causes the damage and this cooling process helps reduce any further damage that acid build up may cause. Malita did amazing with this treatment, had no further complications and we managed to hold her for the first time a few days later.
She then continued to be under care of Southampton NU for a further 7 days. During this time, Malita under went several tests, including EEGs, CAT scans and an MRI. These showed significant damage to 3 key areas of her brain, one including that which controls motor function! At this time they were unable to tell us what this would mean for Malitas future! After all the necessary test were completed, Malita was moved back to Basingstoke NU to continue her new born care where we were released a few days later, with several upcoming hospital visits.
After being discharged from care, we tried to go about life with a new born as normally as possible, but it was clear that Malita was going to be unique from others. There were constant hospital visits, medical conversations and checks on Malita progress.
Malita was clearly a distressed baby, which was so difficult to manage but we were so thankful she was even here, we did all we could. At around 6 months we officially received the diagnosis of Quadriplegic Cerebral Palsy (meaning it affects the whole body). This news was absolutely heart breaking and life has not been straight forward since!
Looking at life today, Malita has to do daily physio, has very low weight, is purée fed for every meal and has very very limited independence and sees what feels like every childhood medical professional there is! However, we are very lucky as she attends an amazing Special Needs School where she is well supported.
On a brighter note and where the Eye Gaze comes in is due to the fact that Malita is bright and cognitively able. Unfortunately, as Malitas CP affects her whole body, including her arm and hand movements, she is unable to use any form of sign language, even very basic movements, she can not perform. In addition, her condition also means she is unable to control her oral movements to talk to us.
Malita has sooo much to say and wants to be like any other toddler but being non-verbal is limiting her life in so many ways, ways I would never even have thought of! An Eye Gaze would enable her to communicate with us effectively, from telling us what she actually wants for dinner, playing silly games with her little brother to explaining why she is upset or even when she isn’t feeling well. It would be an absolute life changer, not just for Malita but for us a family and everyone who knows and works with her.
Thank you very much for taking the time to read our story xx
Organizer
Sophie Norgrove
Organizer
England