In March of 2018 my 2nd grandaughter Alexis was born. She is an IVF baby and was very much wanted for many years...
When she finally arrived the excitement and happiness very quickly turned to shock, terror and fear.
You see, Alexis was born with a recessive gene disorder to which took everyone by surprise as there was no family trace of this condition on either side of the families...
Alexis has Epidermolysis Bullosa abbreviated to EB and also known as butterfly children, where the skin is so fragile that it easily blisters and tears with the slightest friction, bump, scratch, heat and even picking her up can damage the skin which then can lead to infections including septic blood infections which Alexis has had many of all these.
The pain of EB is described to be like a 3rd degree burn on a daily basis.
The daily routine of not only having a newborn / baby now also includes daily dressing and wound care that can take up to 3hrs to complete, let alone also having to endure bleach baths ( yes bleach) to help with killing any bacteria on the skin that cause infections.
The financial burden is immense and the emotional hardship is immeasurable as it's heartbreaking to watch such a little angel go through so much pain everyday.
She's a little fighter and we see her as someone that is here for a reason but it doesn't take the pain away.
My daughter Alarna ( Alexis's mother ) has had to go back to work full time after 10 months and put Alexis in day care every day due to the government not assisting with anything.
It's due to the fact that it's such a rare disease in which around 1000 people in Australia having it so, it's not enough to warrant any assistance according to the government / centrelink
Due to both parents having to work full time and placing Alexis in day care this opens up more worry and adds more risk regarding wounds and infections .
At one time a child took a toy out of Alexis's hand and it completely deliver the skin from her little finger. It was so painful she needed endone as pain relief as well as extra dressings, wound care and another dose of strong antibiotics ( penicillin )
We understand it was an accident and place no blame as the staff are very good with Alexis but if her mum could be a stay at home mum the risk would be reduced greatly
The strength, love and support that both my son in law Harley and my daughter Alarna provide together to ensure Alexis is safe and well cared for is beyond anyone's expectations but they want Alexis to be as happy as any child her age
They are an inspiration and they hardly ever if ever ask for help as they see this as their responsibility, but I see the pain they hide when people look at Alexis strangely or they get questioned as to what's wrong with her or when Alexis is so sick and they can't make it go away
I'm asking for help to try to ease the financial burden on them and to also raise money to purchase a portable nannobubble machine... it produces tiny oxygenated bubbles in the bath that helps with repair and healing of wounds and cleanses the skin of bacteria to promote less infections
This is non toxic and non chemical which will replace the need for bleach baths
Much better for her health, immune system and skin
The cost of the nannobubble machine is just over $6000 AUD plus taxes to import from USA
Alexis would be the first in Australia to do this and I'm hoping that once we test it and it shows to help then I will advocate strongly to get more in for anyone that has this disease and any other skin disease or health issues
The skin is the largest organ of the human body and if we care appropriately for it, it can help in many ways for many people
Your help of any kind be it small or big is appreciated from the bottom of my heart
My vision is to help as many as possible as well as Alexis
Feel free to look up and follow Alexis on her FB page : Alexis Butterfly Princess
I'd also like to give a special thanks to 2 very important organisations in Alexis's life since her birth
1. DEBRA Australia Foundation (non for profit charity) that have helped in so many ways in providing nurse assistance in educating the parents in wound care and information on EB , we help raise funds and awareness for them in the hope of one day having a cure through research
2. Sydney Children's Hospital in which their medical assistance has been amazing, always very caring and prompt with her needs at those frightening times when she's so I'll. They place priority at all times due to the high risk of her infections. Their care and support in not only medical needs but in education and delivering any new hopeful possibilities of wound care to ease the pain and make healing better cannot be faulted
Alexis was part of their Gold Telethon last June 2019
Watch her story to give you a better insight
Sydney Children's Hospital Gold Telethon with Alexis Butterfly Princess
Some Gold Telethon Fun for Alexis
Here are some birth pictures March
In July 2019 Alexis was featured in the epidermolysis bullosa dressings and bandages EBook
The effects of the wounds and scares
Degloved pinky finger after pre school accident
Alexis tries to help with her dressings
Late January 2020
In January 2020 Alexis had a run in with the floor
As she heals
Alexis and her mum Alarna
Alexis , Harley and Alarna
Beatiful happy family picture for their well deserved Xmas 2019 holiday