My Mum’s Moment photography session was something I dreamt up to give something back to a someone who has had a rough ride. When I came up with the idea it was in the lead up to Mother’s Day and decided it was the perfect opportunity to treat a deserving mum. The one special thing I can offer someone is the chance to have some nice family photos and I particularly wanted to offer this to a mum that wasn’t really in the position to treat themselves. With the help of Collette ( Endless Beauty by Collette) and Jacki (Jacki’s Hairdressing), both mum’s who work hard also running their own businesses from home, I was able to offer this opportunity to Bianca Henderson who has an amazing family but one who has also has to endure ongoing hardship. This post is about Bianca and her husband Adam but also about Declan. I hope you stick with me here as I attempt to do justice to their situation and hopefully bring some light to Declan’s rare condition.
After gaining some glossy straight locks and superstar makeup and frankly, looking very glam Bianca and myself (me looking not so glam) headed to the Henderson household for photos and to meet husband Adam and young Declan. During these hours we spent together my mind was frankly blown by the extent of Declan’s condition and the complications and battles that come with it.
Declan’s condition first came to light around the age of 3.5 years when inexplicably he was suddenly unconscious at childcare. And so a nightmare began. More seizures followed however his test came back clear. It took a heartbreaking 18 months until Declan’s condition was diagnosed as an extremely rare and severe form of Epilepsy known as F.I.R.E.S. Unlike other forms that affect one area of the brain, with F.I.R.E.S there are multiple parts of the brain being affected. Not only does this mean that there are so many physical repercussions it also means that the condition is inoperable. Where would you start when so many areas of the brain are firing during one of his seizures?
Declan was now having multiple seizures daily and including the many different types. Simple Partial Seizures (I’m not being flippant- that’s what they are called) though to Tonic-Colic seizures resulting in loss of body control and consciousness, vomiting, just to name a few symptoms. Apart from being terrifying for family to see, the resulting fall often causes terrible injuries and can be fatal in themselves.
F.I.R.E.S is so rare just 3 people in Australia have this form of Epilepsy. Little is know about it and there is also little support for the sufferer’s specific needs. Declan and his family spent long period of time interstate to have tests and eventually Declan was given the opportunity to have an implant known as a VNS (Vagal Nerve Stimulator). Think a bit of circuitry implanted to trip the misfiring of Declan’s brain. This procedure itself took 12 month to be fully up and running as each bit of the circuit board (so to speak) had to be turned on individually.
This implant has improved life for Declan and his family immensely and has enabled him to spend more time at home and out of hospital. Unfortunately this is as far as technology can go to help him. The VNS is not life saving and Declan survives on a multitude of medications which come with their own side effects.
Declan’s rare Epilepsy has effectively seen him suspended in time mentally, so despite him heading towards his 10th birthday he remains in many ways a 3.5 year old boy. Added to this he has compulsive disorders, autistic traits, and many, many, seizures daily. He easily tires and needs to spend much of his time in a wheel chair. He is not able to swallow well and he and his parents are also facing a new battle trying to keep weight on his small frame. If this can’t be achieved he will need to have a feeding tube (or button) to deliver food via the abdomen.
Today I met Declan on “a good day”. A good day is just two seizures and a happy Declan. He was charming, and gorgeously smiley and so very patient with the strange lady that came to take pictures. He was affectionate with his lovely parents and I think he may well have stolen a bit of my heart.
I met Declan on a good day and I was still blown away by the level of dedication and care that he requires. It is impossible to comprehend how exhausting his care must be on a financial, mental and most importantly emotional level. Declan’s frequent seizures, means he sleeps fitfully and cannot be left alone. Not to sleep, not to hang out washing or do simple chores around the house. He needs to be assisted with eating, toileting and dressing. All the things you take for granted when your toddler moves past this stage. As with any child, Declan has his favourite activity. In his case it is playing the Wii and generally does not go anywhere without the Wii hand piece. Declan does not have the motor skill to actually play but his young mind, teamed with his compulsive and autistic traits means, somebody must be playing the Wii so he believes that he is playing. You will notice that the remote features in many of the photos. Watching Declan watching the activity on the Wii you can see the joy and excitement it brings him and on simple observation this activity seems endearing but is also a stark reminder of his level of understanding. It is also makes for a repetitive day for carers.
Declan attends a disability school a couple of days a week where he has fantastic care and dedicated Grandmother Heather is a big support but Adam travels with work and apart from that Bianca gets just 4 hours a fortnight of respite care. Declan requires a special wheelchair which reclines to support him during seizures and when he is too exhausted to stand anymore. The chair requires a fairly lengthy process of dismantling it to enable it to be put in the car. I would say it probably requires some sort of engineering degree also but that was just my take on it. I’m pretty confident that Bianca and Adam have the process down to a fine art. But regardless, Declan is heading towards 10 years old and lifting his dead weight during a seizure would be a mammoth task for Bianca. They are currently fundraising so that they can purchase the specialised vehicle required to be able to fit Declan’s wheelchair in without disassembling.
The future for Declan is precarious and a life long dedication for his parents and family. He will never be able to have a traditional education as we know it, hold down a job or live by himself. The damage to his brain at this point means that his current state is permanent and could worsen at any time.
Despite the battles they face there is such huge love between Bianca, Adam and Declan and I felt so lucky to be witness to it and to be able to get some photos of them all. Bianca looked beautiful and I only wish she was in a position to have been swept off for a lovely night out while she looked so amazing and more importantly felt amazing. Declan was exhausted by the end and could barely stand and had to seek refuge in his wheelchair but I can’t thank him enough for being so lovely.
My fear with these photos is that I have done these as a lovely memento for Bianca, Adam and Declan so for the most part they are the pick of the shots and in two dimensions don’t truly capture Declan’s condition. They show a gorgeous boy (which he is) but down play the severity of his disabilities. I’m also acutely aware that I got to meet Declan when he was having a relatively positive day and that this is not what life for the Henderson’s look like very often. I hope that if nothing else I can help the Henderson’s shed some light on this rare and devastating condition, and provide them with some photos to remember Declan’s good days on those that aren’t quite so shiny.
You can check all the photos from the session in the slide show below