Baby T-jay Tierney
Donation protected
UPDATED.
Unfortunately we are in hospice and being told that you would not be taking your child home as he is to poorly and is at end of life. Watching your baby deteriorating front of your eyes is painful. Having to talk about things with people like his funeral is the most horrible and hardest thing I have ever done as a mum.
With everyone that helped me get his sensory lights etc was amazing the love and support people gave him
I’m asking for a little help with the cost of that horrible day I try not to think about and do find it hard to talk about. I wish T-Jay to have the most memorable send off when that time comes. .
Please Help us raise money for our little boy so we can keep him stimulated with lights. We would like to raise money for a home mobile sensory unit.
We would also like to make special memories with T-Jay so that we can all as a family cherish those happy moments forever ...❤️
We have been told T-Jay has until the age of 2 years. Gm1 is so rear there isn’t another case in England at the moment. There is no cure and no treatment that can be offered as there is not enough research on this disease..
T-Jay has GM1 gangliosidosis
It is an inherited disorder that progressively destroys nerve cells (neurons) in the brain and spinal cord. Some researchers classify this condition into three major types based on the age at which signs and symptoms first appear. Although the three types differ in severity, their features can overlap significantly. Because of this overlap, other researchers believe that GM1 gangliosidosis represents a continuous disease spectrum instead of three distinct types.The signs and symptoms of the most severe form of GM1 gangliosidosis, called type I or the infantile form, usually become apparent by the age of 6 months. Infants with this form of the disorder typically appear normal until their development slows and muscles used for movement weaken. Affected infants eventually lose the skills they had previously acquired (developmentally regress) and may develop an exaggerated startle reaction to loud noises. As the disease progresses, children with GM1 gangliosidosis type I develop an enlarged liver and spleen (hepatosplenomegaly), skeletal abnormalities, seizures, profound intellectual disability, and clouding of the clear outer covering of the eye (the cornea). Loss of vision occurs as the light-sensing tissue at the back of the eye (the retina) gradually deteriorates. An eye abnormality called a cherry-red spot, which can be identified with an eye examination, is characteristic of this disorder. In some cases, affected individuals have distinctive facial features that are described as "coarse," enlarged gums (gingival hypertrophy), and an enlarged and weakened heart muscle (cardiomyopathy). Individuals with GM1 gangliosidosis type I usually do not survive past early childhood.
Thank you for taking the time to read about our pressures little man.
Thank you for donating to help with his care and by helping us build them special memories
Love Marie x
Unfortunately we are in hospice and being told that you would not be taking your child home as he is to poorly and is at end of life. Watching your baby deteriorating front of your eyes is painful. Having to talk about things with people like his funeral is the most horrible and hardest thing I have ever done as a mum.
With everyone that helped me get his sensory lights etc was amazing the love and support people gave him
I’m asking for a little help with the cost of that horrible day I try not to think about and do find it hard to talk about. I wish T-Jay to have the most memorable send off when that time comes. .
Please Help us raise money for our little boy so we can keep him stimulated with lights. We would like to raise money for a home mobile sensory unit.
We would also like to make special memories with T-Jay so that we can all as a family cherish those happy moments forever ...❤️
We have been told T-Jay has until the age of 2 years. Gm1 is so rear there isn’t another case in England at the moment. There is no cure and no treatment that can be offered as there is not enough research on this disease..
T-Jay has GM1 gangliosidosis
It is an inherited disorder that progressively destroys nerve cells (neurons) in the brain and spinal cord. Some researchers classify this condition into three major types based on the age at which signs and symptoms first appear. Although the three types differ in severity, their features can overlap significantly. Because of this overlap, other researchers believe that GM1 gangliosidosis represents a continuous disease spectrum instead of three distinct types.The signs and symptoms of the most severe form of GM1 gangliosidosis, called type I or the infantile form, usually become apparent by the age of 6 months. Infants with this form of the disorder typically appear normal until their development slows and muscles used for movement weaken. Affected infants eventually lose the skills they had previously acquired (developmentally regress) and may develop an exaggerated startle reaction to loud noises. As the disease progresses, children with GM1 gangliosidosis type I develop an enlarged liver and spleen (hepatosplenomegaly), skeletal abnormalities, seizures, profound intellectual disability, and clouding of the clear outer covering of the eye (the cornea). Loss of vision occurs as the light-sensing tissue at the back of the eye (the retina) gradually deteriorates. An eye abnormality called a cherry-red spot, which can be identified with an eye examination, is characteristic of this disorder. In some cases, affected individuals have distinctive facial features that are described as "coarse," enlarged gums (gingival hypertrophy), and an enlarged and weakened heart muscle (cardiomyopathy). Individuals with GM1 gangliosidosis type I usually do not survive past early childhood.
Thank you for taking the time to read about our pressures little man.
Thank you for donating to help with his care and by helping us build them special memories
Love Marie x
Organizer
Marie Hill
Organizer
