Vincent's waterproof pump
Donation protected
Vincent was born with a very very rare condition called a calcuim receptor mutation which means he cannot maintain levels of calcium in his blood. As a result is parathyroid does not work. This is referred to as Hypoparathyroidism. His particular mutation has only been documented once before worldwide.
Low calcium levels mean seizures and death if not treated.
Vincent suffered greatly after birth whilst awaiting diagnosis, he had many seizures and a build of up phosphate that caused blindess due to cataracts. He has since had an operation to his eyes and can see partially with glasses. He spent months in hospital recieving infusions, instead of enjoying his first taste of life at home with his mum.
His life outside a hospital was possible only with the help of a pump strapped to his body that continously infuses medicine, fitted by an amazing doctor at Great Ormond Street. With the help of Hypopara UK, we were put in contact with world specialists to treat his condition. However, this pump is not waterproof as and he grows older he has to realised that he is different from other little boys. Vincent is battery powered and cannot get his device wet. He cannot jump in puddles, paddle in the sea, play in a paddling pool, play in the mud or go swimming. If his pump is to get wet or near moisture, it may get damaged and he would become very unwell and need to be hospitalized.
He can only take the pump off very briefly to wash every few days. Any longer and it would cause illness.
We would love to replace his pump with a waterproof alternative so that even if he can never be like a normal little boy, he can feel a little bit like one and experience activities that other children take for granted.
Medtronic pumps are very expensive, due to the complexing and the accuracy of them. The NHS will not fund a replacement for the pump that he has. We would like to replace it ourselves in or der for him to get the best out of his childhood. He is such a brave little boy.
More information about children and adults suffering with health problems as a result of hypoparathryoidism related illness can be found here: www.hypopara.org.uk
Low calcium levels mean seizures and death if not treated.
Vincent suffered greatly after birth whilst awaiting diagnosis, he had many seizures and a build of up phosphate that caused blindess due to cataracts. He has since had an operation to his eyes and can see partially with glasses. He spent months in hospital recieving infusions, instead of enjoying his first taste of life at home with his mum.
His life outside a hospital was possible only with the help of a pump strapped to his body that continously infuses medicine, fitted by an amazing doctor at Great Ormond Street. With the help of Hypopara UK, we were put in contact with world specialists to treat his condition. However, this pump is not waterproof as and he grows older he has to realised that he is different from other little boys. Vincent is battery powered and cannot get his device wet. He cannot jump in puddles, paddle in the sea, play in a paddling pool, play in the mud or go swimming. If his pump is to get wet or near moisture, it may get damaged and he would become very unwell and need to be hospitalized.
He can only take the pump off very briefly to wash every few days. Any longer and it would cause illness.
We would love to replace his pump with a waterproof alternative so that even if he can never be like a normal little boy, he can feel a little bit like one and experience activities that other children take for granted.
Medtronic pumps are very expensive, due to the complexing and the accuracy of them. The NHS will not fund a replacement for the pump that he has. We would like to replace it ourselves in or der for him to get the best out of his childhood. He is such a brave little boy.
More information about children and adults suffering with health problems as a result of hypoparathryoidism related illness can be found here: www.hypopara.org.uk
Organizer
chrissie thorpe
Organizer
Inspired to help? Start a fundraiser for someone you know
