We have always tried to help others, and bring possitivity and happiness to those around us. But now we are the ones that need help. We desperately are hoping we can raise enough to bring our courageous boys smile back.
We plan on doing this through extra counselling sessions for the whole family, buying some medical equipment for home so Bentley can be at home more often and potentially even go out to have a picnic or see the beach again, and just helping with the everyday medical costs and bills that keep piling up.
Here is our story..........
Over the last 9 years our family has encountered many challenges and heartache with the deteriorating health of our amazing first born Bentley.
Bentley required open heart surgery as a newborn to repair an incredibly rare and more often then not, fatal heart condition. From here on Bentley has experienced more health challenges, treatments and procedures then any person should in their entire lifetime, let alone a child.
Unfortunately, Bentley's previous health woes were just a warm up to what was yet to come.
12 months ago Bentley's health began to deteriorate again, slowly at first but then accelerated over the past 4 months. Bentley went into early stages of organ failure, is sometimes unable to even walk short distances without severe shortness of breath and even struggle to eat or drink without extreme loss of energy. Our poor boy has not been to school since term 1, which is heartbreaking to see him miss his friends so much.
This past week we recieved a long awaited diagnosis. Bentley has
Tracheomalacia -which means his trachea will sporadically collapse or go "floppy" as described by his surgeon
Bronchiectasis - all the little holes in his airways become blocked from mucous ect and create infection, which Bentley can not cough up or clear.
Mild pulmonary hypertension - the oxygen veins from his heart to lungs are under too much pressure
And structural abnormalities impairing breathing, eating and speech.
This is on top of the literal list of diagnosis' I carry around in my wallet with me.
Unfortunately, due to Bentleys age and other health concerns, there is no surgical option and are faced with only options to manage symptoms in an attempt to provide our boy with somewhat quality of life, and dare I say it, a childhood.
We normally would not ask for help, or even share details of our struggles. However, we are breaking. Our hearts, our bodies, our minds are breaking.
We decided to start this go fund me page after a family member encouraged us to reach out for support.
The massive cost with medical treatment and even just parking fees involved is dibillitating. Neal and I both work really hard but when you add driving to brissy so much, then all the extra therapies like speech, ot, enteral feed supplies ect ect its getting really hard to keep our heads above water.
We always put our children first, so any fun or socialising is just out of the question. We have 4 children, 2 with special needs and cannot remember the last time we took them out for some family fun, even just to the beach.
It is becomming more and more difficult for Neal and I to cope and its so iimportant that we keep a good head on our shoulders to continue to fight for our boy and really need professional counselling and support services for our other 3 children.
Our daughter in particular who is 6, has been on the front line and witnessed some truly scary moments. We would so love to give her some fun, joy, some time away from all this stress.
We would be forever greatful to anyone and everyone who supports us during this very difficult and ongoing journey. Any donation big or small will be recognised and appreciated more then we can put into words. Even if you could find it in your heart to spare 5 or 10 dollars, that's like a full hour of parking!!!!!
We know there are so many families out there doing it tough and we so appreciate everything our family, friends and community can do to support us at the moment.
We have a goal to get Bentley well enough and strong enough to be able to attend even just 1 hr a day of school.
Please help us bring this gorgeous boys smile back.
With love and positive optimism
The McNeal family
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