Bella's Medical/Equipment costs
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Thank you for visiting my Go Fund Me page! This page has been set up to assist our family with ongoing cost of therapy, essential life saving home equipment, medication and medical costs associated with Bella's severe long term challenges.
Bella is a beautiful Brave 8 year old girl, who has a wide range of medical and developmental disabilities including Autism, severe ID, dystonia & profound intractable epilepsy, PCDH19, SCN9A, KCNQ2 which are rare lifelong genetic disorders including multiple additional medical & developmental challenges, along with mental illness.
Many people have asked us over the years how they can help.
It is not easy to ask for help by any means, pride has stopped us many times but after 8 years of round the clock care & the endless ever mounting diagnoses Bella continues to receive we need your help.
Bella has spent the most part of 8 years missing out on almost her entire childhood, to date, growing up in hospital.
When not in hospital receiving emergency treatments & infusions Bella attends multiple medical & developmental appointments, receiving many procedures & therapies countless times per month.

Last year was one of the worst years of her short life so far & we truly thought Bella was not going to make it. Drs all but gave up on her, telling us there is nothing more they can do for Bella, as she has a severe life altering life limiting disorder & is expected to have a shorter life span -early death. In addition to this Bella is all so at an *extremely high* risk of SUDEP due to her frequent life threatening seizures. We now need to focus on quality of life over quantity -which is a choice no parent should ever have to make.
In order to keep Bella home & out of hospital as much as possible we need to create a hospital at home environment. All of the medical equipment, additional supplies, adaptive equipment & maintenance repairs are expensive & the medical cost is not covered by the hospital or any other agency.
In order to try to keep Bella in a safe environment so she can try to have some kind of limited quality of life -to make some kind of childhood memories, we need to ensure we have the life saving equipment needed including suction machine & ongoing maintenance, multiple oxygen tanks & associated equipment such as masks, tubing, large home tanks, portable tanks, oxygen concentratior with associated maintaince etc along with multiple monitoring machines, specialised wheelchairs, hoists, hospital bed & addition equipment plus much more.

Bellas multiple challenges are life long, complicated by frequent clusters of life threatening seizures with low oxygen. The full picture & true extent of Bellas condition is still emerging but we know it is life long, serious & that Bella is all so at the most severe end
of the PCDH19 spectrum. Her frequent status seizures can last from 30 minutes to several hours with each seizure, each one a medical emergency that has the potential to cause brain damage or kill so it is of the up most importance we have the correct emergency & long term equipment in our home. This little girl spends more time in hospital than anywhere else & it shouldn't be this way, but it is because she is medically fragile. Bella The Brave has endured too much already in her short life, so as long as their is still fight left in this little girl we must help her get the support she so desperately needs to remain as comfortable & safe at home as possible.
So it is with this we are finally reaching out, asking for your assistance.
Many thanks from an eternally grateful mumma
Bella is a beautiful Brave 8 year old girl, who has a wide range of medical and developmental disabilities including Autism, severe ID, dystonia & profound intractable epilepsy, PCDH19, SCN9A, KCNQ2 which are rare lifelong genetic disorders including multiple additional medical & developmental challenges, along with mental illness.
Many people have asked us over the years how they can help.
It is not easy to ask for help by any means, pride has stopped us many times but after 8 years of round the clock care & the endless ever mounting diagnoses Bella continues to receive we need your help.
Bella has spent the most part of 8 years missing out on almost her entire childhood, to date, growing up in hospital.
When not in hospital receiving emergency treatments & infusions Bella attends multiple medical & developmental appointments, receiving many procedures & therapies countless times per month.
Last year was one of the worst years of her short life so far & we truly thought Bella was not going to make it. Drs all but gave up on her, telling us there is nothing more they can do for Bella, as she has a severe life altering life limiting disorder & is expected to have a shorter life span -early death. In addition to this Bella is all so at an *extremely high* risk of SUDEP due to her frequent life threatening seizures. We now need to focus on quality of life over quantity -which is a choice no parent should ever have to make.
In order to keep Bella home & out of hospital as much as possible we need to create a hospital at home environment. All of the medical equipment, additional supplies, adaptive equipment & maintenance repairs are expensive & the medical cost is not covered by the hospital or any other agency.
In order to try to keep Bella in a safe environment so she can try to have some kind of limited quality of life -to make some kind of childhood memories, we need to ensure we have the life saving equipment needed including suction machine & ongoing maintenance, multiple oxygen tanks & associated equipment such as masks, tubing, large home tanks, portable tanks, oxygen concentratior with associated maintaince etc along with multiple monitoring machines, specialised wheelchairs, hoists, hospital bed & addition equipment plus much more.
Bellas multiple challenges are life long, complicated by frequent clusters of life threatening seizures with low oxygen. The full picture & true extent of Bellas condition is still emerging but we know it is life long, serious & that Bella is all so at the most severe end
of the PCDH19 spectrum. Her frequent status seizures can last from 30 minutes to several hours with each seizure, each one a medical emergency that has the potential to cause brain damage or kill so it is of the up most importance we have the correct emergency & long term equipment in our home. This little girl spends more time in hospital than anywhere else & it shouldn't be this way, but it is because she is medically fragile. Bella The Brave has endured too much already in her short life, so as long as their is still fight left in this little girl we must help her get the support she so desperately needs to remain as comfortable & safe at home as possible.
So it is with this we are finally reaching out, asking for your assistance.
Many thanks from an eternally grateful mumma
Organizer
Helen Owen
Organizer
Llandilo, NSW