No matter how hard the times are, support, happiness and kind words are always valued. Family, photography and charity are among these words that bring a smile to my face. Thanks to Charlie House, I had an amazing opportunity to join these three things together. How? Read on to find out!
Charlie House: A Local Children’s Charity
Charlie House is a local children’s charity which supports babies, children and young people with complex disabilities and life-limiting conditions, and their families, in the North-east of Scotland. Look at their web page to see more.
Since the beginning in 2011, they have done a great job including activities like sibling clubs, nurse support, one-to-one emotional support and many more to their services.
Lock down changed their work in many ways, like many of us – they also had to move online really fast. At the same time, requests for support had gone up 84% since lock down began with a lot of the team’s focus going into combating feeling of stress and anxiety. Therefore, their support services had to use all their creativity to engage with families in new ways.
‘Stay At Home’ Photoshoots
When I was asked to do ‘Stay at Home’ Photoshoots with some of the families involved in their program, I happily agreed.
Once again, I used the FaceTime app to capture families in their own homes. Although never the same as having a proper in-studio portrait session, this was a great way to capture families memories whilst in Lockdown. (I’ve even done a couple of shoots for a magazine using this method! Click here to read more on Facetime Sessions.
Two local families’ stories
Two of the families agreed to share their stories on here. They know exactly how it feels to adapt to the “new normal”. I have so much to learn from them.
Grace and her family
I’ve ‘followed’ Emma on instagram for a while and was lucky enough to do a Cake Smash with Grace for her 2nd birthday. When Charlie House asked me to do a FaceTime Photoshoot with the family, I jumped at the chance to see this little beauty again – even though I couldn’t get my cuddle-fix this time round.
“So much fun,“ was how ‘a Very Happy Mama’ described this day in a thank you note. Steven and Emma have been together since 2013 and they have two beautiful children. Their long story short is that their first child – baby Grace – was small throughout the pregnancy and things didn’t go to plan when they went into the hospital on the 38th week of pregnancy to be induced.
“Whilst being induced, Grace’s heart rate dropped so I was taken for an emergency section. Grace was born in a poorly condition and was taken to the NICU where she starting having seizures. Within a couple of hours Grace was cooled (therapeutic hypothermia ) and we were told that Grace had been starved of / had a lack of oxygen to her brain. This is called Hypoxic Ishemic Encephalopathy (HIE).”
Grace is 3 now, but due to this episode she has spastic quad cerebral palsy, microcephaly, epilepsy, CVI (cortical visual impairment), global developmental delay (GDD). Grace has a baby brother. Gibson was born in July 2019. Mama and Daddy say that both babies are very taken with each other and it’s amazing to watch them grow.
“We’ve been very lucky with all the support we’ve had from our family, friends, doctors, groups and now Charlie House.”
They are very grateful to have had some wonderful experiences for the whole family as no one is left out. Charlie house has been amazing. “They want to help you in making memories and doing experiences that you thought weren’t possible.“ For Emma and Steven it is also very valuable to know that they are not alone, as they have met lots of families during these years with Charlie House.
Elena and her family
I first met Scott and Mairi when I was their wedding photographer (quite a few years ago now)! I was lucky enough to photograph Lottie when she was born and then Elena at just a few days old.
Elena is a beautiful girl and the youngest of two sisters. She was born with a rare genetic condition called Charge Syndrome. Mairi and Scott had no idea there was anything wrong with her, although Mairi recalls this niggle deep in her tummy telling her from the very start that something just wasn’t right. When Elena was admitted to hospital at 3 weeks old with an upper respiratory infection and failure to thrive, everything started to unravel. “It was then that her heart murmur was heard and it was then that we began to learn about the problem with her eyes.”
Elena was flown to Glasgow by air ambulance at 8 weeks old and whilst there she underwent heart and airway surgeries. They were at the hospital for 11 weeks and during that stay, the family was told their baby girl had Charge Syndrome. Genetic blood tests were used to diagnose this. “Elena’s diagnosis rocked me to my core. Life changed forever that day,“ admitted Mairi.
As Charge Syndrome is a complex condition that causes many medical and physical difficulties, the following months were all about adapting to the new normality: hospital and therapy appointments.
Elena is significantly visually impaired, hearing impaired and has global developmental delay. Her parents say that although communication is a major challenge for her, their little miracle is amazing. “Full of joy and love, and she teaches us something new every day. Some days can be incredibly tough, but my heart literally bursts with pride for our wee warrior.“
Please support local families by donating to Charlie House
To find out more about how you can support local families, please go to http://www.charliehouse.org.uk/support-us/
