Leo the lionheart ❤️ Complex needs
Donation protected
Hi...
I'm trying to raise some funds my son Leo
Leo will be 5 years old in June. He was born with complex needs and has an undiagnosed syndrome, he has been included in a study called the DDD study to try and help us get some idea of what syndrome he has but am yet to hear of any news. He was born with many disorders these include microcephaly, (small head) ventricularmegaly, (brain condition), IUGR (intrauterine growth restriction), Congenital heart disease - of which he recieved a ASD/VSD surgery (open heart surgery) in 2010 but he continues to have persistent pulmonary hypertension. He has never taken anything orally, he has a gastrostomy ( a tube that goes directly into his stomach) and has therfore never tasted any food other than a specialised medicated milk which provides high calories to help him grow. Leo has global developmental delay, he is visually impaired and has extreme difficulty with fine motor skills also known as GMFCS level 5, He has a poor immune system and is prone to illness, I have been told he will have a short life expectancy.
I am a single mum of two, and can't work as I have to care for my son 24hrs a day.. he needs one to one support, and often becomes very sick.
I would love to raise some funds to enable him to live life to the fullest, create a sensory room in his bedroom. and purchase other equipment that will help mentally physically & visually stimulate all his senses on a daily basis in our home rather that just at his school (curnow school) or when we go for respite at Little Harbour Hospice. Sensory equipment costs a bomb and I would never be afford to be able to do this on benefits. As it would takes years to save this kind of money on my own.
I have posted a few images of some of the equipment i would like to try and raise funds for.
Please can you help me raise the funds to do this? Xx
I'm trying to raise some funds my son Leo
Leo will be 5 years old in June. He was born with complex needs and has an undiagnosed syndrome, he has been included in a study called the DDD study to try and help us get some idea of what syndrome he has but am yet to hear of any news. He was born with many disorders these include microcephaly, (small head) ventricularmegaly, (brain condition), IUGR (intrauterine growth restriction), Congenital heart disease - of which he recieved a ASD/VSD surgery (open heart surgery) in 2010 but he continues to have persistent pulmonary hypertension. He has never taken anything orally, he has a gastrostomy ( a tube that goes directly into his stomach) and has therfore never tasted any food other than a specialised medicated milk which provides high calories to help him grow. Leo has global developmental delay, he is visually impaired and has extreme difficulty with fine motor skills also known as GMFCS level 5, He has a poor immune system and is prone to illness, I have been told he will have a short life expectancy.
I am a single mum of two, and can't work as I have to care for my son 24hrs a day.. he needs one to one support, and often becomes very sick.
I would love to raise some funds to enable him to live life to the fullest, create a sensory room in his bedroom. and purchase other equipment that will help mentally physically & visually stimulate all his senses on a daily basis in our home rather that just at his school (curnow school) or when we go for respite at Little Harbour Hospice. Sensory equipment costs a bomb and I would never be afford to be able to do this on benefits. As it would takes years to save this kind of money on my own.
I have posted a few images of some of the equipment i would like to try and raise funds for.
Please can you help me raise the funds to do this? Xx
Organizer
Carrie Tyler Leo
Organizer