Our three-month old baby, Will had his meningitis misdiagnosed at the ED, twice. He's profoundly brain damaged, deaf and blind.
Huge mistakes have been made and our boy has been left very broken by his meningitis. Will is making great progress and regularly proves his doctors wrong. He is a strong boy and a real fighter. You can help Will.
When our beautiful three month old baby became ill, he was sent by our family doctor to Wellington Hospital on two consecutive days. Each time, he was sent home with a series of emergency department doctors and paediatricians misdiagnosing him. The third time we presented at Wellington Hospital, William went into septic shock caused by bacterial meningitis – a very serious disease that attacks and does serious damage to the brain. Will is now profoundly brain damaged, wracked by seizures and very largely immobile, deaf and blind.
He has dangerous and frequent (and scary) respiratory infections that require hospitalisation. Doctors say that a respiratory illness like pneumonia will very likely be the cause of his passing. In July he was hospitalised with pneumonia and was put on a ventilator for life support. The doctors at Wellington Hospital have stated that they are not willing to provide life support again.
People underestimate our son and their expectations can be low. However, our son is making progress. It is slow and painstaking – and undoubtable – well worth the considerable resources, effort and love that are poured into our boy. With this help, care and support our son has managed to prove his medical team wrong again and again. We now take prognoses with a grain of salt. He can eat and drink, and is no longer tube fed. We know that Will has some degree of hearing and vision and while it is surely very impaired, he is not quite confined to a world of total darkness and silence – the initial prognosis. He is building muscle strength and muscle control.
Everyone who meets Will is captured by his spirit – he has a strong presence. He loves to be cuddled, hugged and stroked, and responds well to physical contact, being talked to and music. His favourite people are definitely his grandmother, big sister Annabel and Auntie Helen.
Donations are needed and very welcome. Looking after Will and being proactive in his rehabilitation is very expensive and takes up so much of our time and energy. He requires new specialist equipment and services as he grows and develops. We need to find a way to get his seizures under control. We may need to fund a legal challenge against the life support decision. He needs your help.
We don't know how long our lovely boy will be with us, it may be sixth months, and it may be twenty years. Given the likely media exposure generated here, this is our one chance to raise enough funds to help him through his life and support his continued cognitive, physical and spiritual development. If Will receives enough in kind donations we will establish the William Burton Trust Fund and use this money solely for Will's betterment.
I am Will's father. We don't know how long our lovely boy will be with us, it may be sixth months, and it may be twenty years.
We are hoping to set up a trust fund to help WIll through his life. There is much we can do for our son in his rehabilitation and treatment, especially around his seizures. We may need to fund a court challenge to Wellington Hospital's decision not to offer further life support during his respiratory illnesses.
A final thank you ... 30 September 2015
Well it's the end of September and our time here is almost up. Again, thank you all for the amazing support - you're generous donations, kind, supportive and wise words have meant so much.
The ground swell of public support that forced Wellington Hospital to reverse its decision on not providing further life support for our son (if needed) was just amazing. You guys are the best!
So, we're checking out now. No offence, but I hope you won't be seeing us in the news any more - no news is good news! But we'll never forget the way people have rallied around us and our dear little son William.
The Burton family