help us fund ariellas care
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Ariella was born with a 10% survival rate, she has a rare genetic condition called nager syndrome and CDH.
Ariella has a very complex airway and requires addition support, due to these conditions she has required a tracheotomy tube and a mini button.
The tracheotomy is what she is dependent on and cannot breathe without it and the mini button is how she eats. Our daughter requires 24/7 care in order to keep her airway safe, the tube can become blocked at any time and she can stop breathing, the tube can also come out at any time.
We have been told today that Oxford city council are cutting all her nighttime care just before her most vulnerable winter months and her mother is expected to not only stay awake and provide all the care at night but to also take Ariella to school and stay there until someone is trained - with no opportunity to sleep and all support being stripped.
We have made this go fund me page just to help support and try and provide private care throughout the harsh winter months until Ariella's able to go to school and mum can sleep during the hours Ariella is at school.
We feel like we have no choice but to ask for help, we are appealing the decision made to strip all night care but this also will take time that we don't have. We have spoken to other family's with conditions similar to Ariella's and they are provided 3 -7 nights of care on average average.
Ariella's care was accessed last year and they said that she was entitled to 5 nights, it has been accessed this year with no changes in Ariella's health or care requirements and they are now telling us that we are entitled to nothing, we have no choice but to ask for help just to get us through the months where the appeal will take place. If you can donate anything please do, anything will help , and please share this campaign. On average per month ariellas care costs £4000 - even if by this we manage to provide a few nights care it would help dramatically thank you so much!
back ground info
Ariella requires 24/7 care she has two rare conditions called nager syndrome which is a name her her complex air way small jaw limited jaw movement and hand and arm restrictions, she also has cdh which is a name for a hole in her diaphragm her bowels were up in her chest and restricted her lungs from growth she had a 10% survival rate and spent 10months in hopsital, ariella breathes and is fed through a tube if that tube gets blocked she struggles breathing so in order to keep that tube and her airway safe it must be monitored 24/7 in terms of suctioning any secretion and making sure it hasn’t come out
Ariella has a very complex airway and requires addition support, due to these conditions she has required a tracheotomy tube and a mini button.
The tracheotomy is what she is dependent on and cannot breathe without it and the mini button is how she eats. Our daughter requires 24/7 care in order to keep her airway safe, the tube can become blocked at any time and she can stop breathing, the tube can also come out at any time.
We have been told today that Oxford city council are cutting all her nighttime care just before her most vulnerable winter months and her mother is expected to not only stay awake and provide all the care at night but to also take Ariella to school and stay there until someone is trained - with no opportunity to sleep and all support being stripped.
We have made this go fund me page just to help support and try and provide private care throughout the harsh winter months until Ariella's able to go to school and mum can sleep during the hours Ariella is at school.
We feel like we have no choice but to ask for help, we are appealing the decision made to strip all night care but this also will take time that we don't have. We have spoken to other family's with conditions similar to Ariella's and they are provided 3 -7 nights of care on average average.
Ariella's care was accessed last year and they said that she was entitled to 5 nights, it has been accessed this year with no changes in Ariella's health or care requirements and they are now telling us that we are entitled to nothing, we have no choice but to ask for help just to get us through the months where the appeal will take place. If you can donate anything please do, anything will help , and please share this campaign. On average per month ariellas care costs £4000 - even if by this we manage to provide a few nights care it would help dramatically thank you so much!
back ground info
Ariella requires 24/7 care she has two rare conditions called nager syndrome which is a name her her complex air way small jaw limited jaw movement and hand and arm restrictions, she also has cdh which is a name for a hole in her diaphragm her bowels were up in her chest and restricted her lungs from growth she had a 10% survival rate and spent 10months in hopsital, ariella breathes and is fed through a tube if that tube gets blocked she struggles breathing so in order to keep that tube and her airway safe it must be monitored 24/7 in terms of suctioning any secretion and making sure it hasn’t come out
Organizer
Renado Renz Skeete
Organizer
England
