In the lead up to EB Awareness Week in October, Holsworthy resident Alarna Gordon is sharing her story about her daughter Alexis who has Epidermolysis Bullosa (EB): a rare skin disorder that is often described as the "worst disease you've never heard of."
"I wanted to spread awareness about EB, it's not very well-known and hopefully get some more funding and donations from the community," she told the Champion.
Here is Alarna's story on her own butterfly child (children with EB are also known as butterfly children) Alexis.
As any new parent - all I wanted was for my baby to be healthy and be able to have a "normal" life. My worst fear throughout my pregnancy was that my baby would be sick, well I guess that fear became reality for my husband and I. Alexis was born on March 26 and it was evident at birth something was wrong, from this moment our world completely changed.
Alexis was born with de-gloved feet, blisters in her mouth, missing skin on her back, hands and stomach. At first the nurse said "Its normal - babies who are overdue; sometimes their skin peels". I knew this was more than just "peeling" of the skin. These are wounds - wounds that looked so painful.
Alexis was admitted into the NICU ward at just three hours old and was bandaged up like a little mummy - we couldn't even touch or hold our new baby, the baby we went through multiple rounds of IVF to have. I still remember the words that came from the doctor - "We believe Alexis may have a rare skin condition called Epidermolysis Bullosa (EB). She will be bed ridden for the rest of her life and you will be in hospital for many more months." My heart crushed into 1000 pieces. I have never cried so many tears, having a baby should be a joyful and an exciting time of your life but for us it was a scary and unknown journey we were about to walk. I didn't know if I was even strong enough to care for a child with such high needs, but the mother inside of me took over, I became a different person in less than 24 hours.
When Alexis was transferred to Sydney Children's Hospital, we saw an AMAZING team of doctors, nurses, dieticians and dermatologists. They explained EB to us and gave us so much hope. Finally, after the emotional horror of the last 24-hours, all we needed to hear was everything would be OK and this is exactly what happened.
Alexis was diagnosed one week after birth with Recessive Dystrophic Epidermolysis Bullosa (RDEB). Alexis is the first member of both sides of the family to have EB. We were told that Alexis would have to have daily dressing changes for the rest of her life, her toes and fingers may web due to multiple injuries, she will lose her finger and toe nails due to blisters under the nail bed, excessive scarring all over her body, she will find it difficult to swallow normal foods as this may cause blisters not only in her mouth but also in her throat, her life expectancy has decreased due to EB and we will be in and out of hospital for the rest of her life. Whist in hospital Alexis contracted blood, urine and skin infections, she was placed on IV antibiotic at seven-days-old, with multiple attempts she had three cannulas to complete her seven-day course of antibiotics.
I never had thought about the chance that our child would have a life threating disease, every day in hospital was a blessing and torture all in one. We were so blessed to have an amazing group of people caring for Alexis and giving her the best chance at life but deep inside all we wanted was to be home with a healthy baby to care for. We relied so much on the nurses and doctors we never thought we could do this on our own, but we were determined to be the best parents and provide her the best care she needed to live her life to the fullest.
My heart crushed into 1000 pieces. I have never cried so many tears.
Our EB nurse is just the best - her help throughout our stay in hospital was amazing; the information provided, and the dedication is unexplainable. We couldn't have asked for a better team of doctors, dermatologists, dieticians and ward nurses at the Sydney Children's Hospital. The support was amazing then and still is now. The hospital provided a nurse to come to our house and assist us with bath and dressing change, without this extra we may never have left the comfort of the hospital as we didn't have that many hands at home, help wasn't a button press away. The home nurse care made it easier to adjust to life with EB outside of the hospital.
I am in regular communication with our EB nurse nothing is too big or too small for her, she goes above and beyond for all EB kids not just Alexis. We wouldn't be where we are today without her guidance and support over the last 8 months.
Rebecca got us in touch with DEBRA. DEBRA have made living with EB so much easier. The support provided by this amazing organisation has been life changing. This team has provided cooling for Alexis as the heat is not good for EB kids, DEBRA have taken a huge load financially off our shoulders by assisting us with the purchasing of bottle teats, the cost of her daily medications and dressing expenses that are not covered by the government. We even get follow up calls and emails to check in on Alexis to see how she is and if she requires any assistance. They work extremely hard and are dedicated to spreading awareness of EB and its impact on families just like ours. They care about every individual who has this terrible disease, we are not just a number to them. I love that DEBRA know our story, they know us, we are not just another family with EB to them - it's like we are part of a bigger family and community.
Every day we are constantly checking her body for new blisters or skin injuries, every nappy change we pray that her clothes and nappy have not damaged her skin, every time she picks up a toy we cringe, this is our life. Alexis is so brave, she is always smiling and laughing. How can we be upset when she is so happy?
We spend multiple amounts of hours each week soaking Alexis in baths, dressing changes, lancing blisters and dressing skin injuries. Each day is different and parents with EB babies must think differently, even when we pick her up, we must analyse the situation. The toys she plays with, the clothes she wears, the spoons she eats with, car seats, prams, highchairs, mattress' and bottles all potentially can cause damage.
Life as EB parents is hard. We have had except that family and friends are going to injure Alexis' skin, we have had to learn not to blame people for causing more damage, we have to let Alexis live a somewhat 'normal' life even if it means she will be in pain because we can't wrap her in cotton wool and protect her forever.
Alexis started day care in October 2018, this was far was the scariest time I have experienced since her birth. I had to let her go and have people I didn't know well enough care for my child, my child whose skin can tear just from being picked up incorrectly. I lost sleep every day before she started day care, I had four orientation days just to be sure I could leave her in the care of a centre. Today, I don't even think about it, the educators at her day care are fabulous, the care provided has been amazing. They are so gentle with her and they adore her. Alexis loves the attention, so day care has been the best decision we made, I don't even think twice now about dropping her off anymore, she absolutely loves everyone. The morning smile as soon as we walk in and see all the educators melts my heart, that is the reason I know she is OK and they are caring for her to the best of their ability.
We do not want EB to define her; we do not want her to be known as 'that girl with EB.'
We don't know what to expect for the future, we don't know if Alexis will get worse or if she only has a mild case of EB. Every day is different, sometimes we can go a whole week with not one new blister, other weeks we can have a breakout every day. I'm not going to lie, some days I find myself crying as I hold her while she sleeps in my arms, I just look at her and in those quiet moments I think, how can she be so brave? How can she still smile and laugh?
Recently we purchased a new hydrotherapy machine called a Nannobubble for Alexis - The nanobubble system is a revolutionary system that saturates your bathwater with billions of tiny air bubbles called Nano Bubbles that will turn your bathwater a milky white. Frequent bathing in Nano Bubbles will help deep-clean skin pores to leave skin feeling smooth and soft. Nano Bubbles are tiny bubbles, the size of 0.2 microns; 250 times smaller than skin pores (30-50 microns). These bubbles will dive deep into the skin to remove toxins, dust, and other impurities.
We have seen such a great difference in Alexis skin and health since using the machine. Its not a cure but it has made such a difference.
There have also been moments where I blame myself for bringing her into this world - how could I be so cruel to let her live in this much pain? I wish I knew about EB before I had her, I wish I knew my husband and I were carriers; I wish we knew so we had a 25 per cent chance our children could inherit EB. But on the other hand, I am blessed to have her, and I am so proud to have her as my daughter - she has opened up not only my heart but the heart of so many people.
We do not want EB to define her; we do not want her to be known as 'that girl with EB.' She has such a big personality and we know she will not let EB control her life. Our good days far outweigh our bad days. Alexis's smile is so contagious, and people are naturally drawn to her. We are forever grateful for the support network that family and friends have given us. Without these important people, I don't know where we would be.