On June 1st, the most beautiful, joyful image of a little girl appeared on my Facebook timeline and I’ll be honest, apart from registering how beautiful the child was and realising that it was an appeal for money, I didn’t engage with the post any further. I think it was a combination of seeing so many appeals during lockdown, some of which I’d already committed to, and trying to have a social media free day!
A couple of days later, I got a message on Instagram from a friend asking me had I seen the This INKAREDIBLE Kid Appeal. I said no, but promised I would take a look, and there before me once again, were an array of photos of this beautiful child brimming over with happiness and with the most glorious of smiles.
Said friend has the honour of being god father to this child and I read on.
Who would have guessed the story behind that bright little face – the face of Inka!
Holly, Inka’s Mum describes Inka as:
‘………..full of joy, spreading smiles and laughter wherever she goes. She has a zest for life, always wanting to explore the world around her as best as she can, which is not always easy given her physical challenges.’
‘….given her physical challenges…..’
……..and there lies the most Inkaredible story! A miraculous story full of love, hope and optimism but also one of extreme frustration, loneliness and despair. It was a story which moved me and I hope will move you to donate to this appeal.
The two photos of Inka above are amongst my favourites and show her in her first ever Bristol City football kit. Inka can’t stand or walk without support, let alone kick a ball, but that doesn’t stop her telling everyone she’s going to be a footballer one day! Go Inka!
Her Daddy John is a die-hard Bristol city fan and Inka learnt to sing the fan songs before she could sing nursery rhymes.
On with the story! Holly got pregnant very quickly and thoroughly enjoyed her pregnancy. Following a lovely, relaxing holiday in Spain with her husband John, she returned the day before her midwife’s appointment at thirty one weeks. The midwife was a little concerned that the baby’s heart rate didn’t sound quite normal and just to be on the safe side suggested that Holly should go to the Assessment Unit at Southmead Hospital in Bristol.
A little shaken by this, given how well she was feeling, Holly asked her parents to drive her there. After a two hour wait at Southmead she was finally given a trace, a painless procedure which monitors foetal heart rate. From there it was action stations: the midwife called the senior midwife who called the registrar who called the consultant who shouted to the team:
“get a line in her and get her to the scan room.”
“I need to deliver your baby now.”
In the frenzied five minutes that followed, Hollie’s world came crashing down as her clothes were removed, her hair was put up, she was put into a pair of surgical stockings and whisked off to theatre. Luckily her mother was there and was able to contact her husband John who came immediately.
Inka was delivered by c section at 2.45pm and although she did make a few little initial sounds, she deteriorated rapidly and had to be intubated and placed on a ventilator.
Holly and John were powerless to do anything and could only watch as the NICU doctors and nurses surrounded her, hooking her up to monitors, administering drugs, providing breathing support and undertaking numerous tests and scans. They saved Inka’s life for which they will always be indebted to them.
Inka’s first night in this world, in the NICU (Neonatal Intensive Care Unit) was one of her toughest as her heart struggled to regulate. Twelve hours after she was born, in the middle of the night, an extremely concerned neonatal consultant explained that there was nothing more he could do to help her and the only option was to transfer her to St. Michaels in Bristol to see a specialist cardiology team. He was clear that her life lay in the balance. Inka clung on and she survived that night, but the after effects of her erratic heart changed the course of her life forever.
Holly was not allowed to go and see Inka, let alone hold her because she was not yet weight bearing, but the thought of Inka being transferred to St. Michaels without seeing her, was too much, so her husband John commandeered a wheel chair and took her to Inka who was transferred at 2.00am
Holly discharged herself from the hospital at midday the next day, just ten hours after Inka’s transfer.
Two weeks into Inka’s six week stay in the NICU a routine scan brought Holly and John’s world crashing down for the second time when a consultant they had never met before told them that their precious baby girl would more than likely have severe physical and mental disabilities. He also warned of a high risk of seizures, vision and hearing difficulties and the possibility of her not being able to feed orally.
Overwhelmed with fear and sadness, Holly and John promised each other they would do whatever they could to make sure Inka’s life was filled with happiness.
Holly clearly remembers falling asleep that night just hoping that Inka would, if nothing else, be able to smile, to communicate that happiness, that was all she was hoping for at this stage.
Two weeks after that diagnosis Inka started breast feeding and it was the first of many times that she proved her prognosis wrong. Four months after that, she smiled for the first time. This is Inka at five months experiencing kangaroo care or kangaroo mother care, sometimes called skin-to-skin contact, a technique of newborn care where babies are kept chest-to-chest and skin-to-skin with a parent, typically their mother.
During Inka’s time in the Neonatal Intensive Care Unit and Special Care Baby Unit John and Inka described it as being in their our own little support bubble. The NICU nurses were truly wonderful, offering so much support to them as new parents of a disabled child, as well as providing expert care to Inka.
When they were finally able to take Inka home they were terrified. This photo shows Inka in her car seat just before they left the NICU. They are both smiling at the camera, but on the inside their minds were racing and their hearts were breaking, wondering how are they were going to bring up a severely brain damaged child? How they would cope without the NICU support bubble? What if she stopped breathing again? Would she be happy? Would she smile? What could they do to help her?
Sadly these worries escalated once they got Inka home and for the first ten months of her life they struggled. For six months there was no community support available, no one to turn to for guidance, no therapy or treatment for Inka. They felt isolated from other new mums and dads as their reality was so different from those bringing up typical babies. Eventually Holly forced herself to take Inka along to Springboard, a local charity which supports children with additional needs and their families. It was here that they finally found the support they had been needing so badly.
It was around this time that Inka started having seizures and she and Holly had to go into hospital for a week. On returning home there was more medical support from her neurologist and she also started having some physio and occupational therapy sessions with the NHS. She was also allocated a qualified teacher for the visually impaired who was very kind and helpful.
These two photos show Hollie before the seizures, the middle one shows her in her dressing gown just before she went into hospital.
And these are just after the seizures where her appearance has changed quite significantly. She was put on a very high dose of steroids to help control the seizures which led to her gaining a lot of weight very quickly and looking swollen all over.
As Inka has grown older NHS support has increased, but sadly children’s community services are seriously understaffed and underfunded and Holly and John are paying privately for most of Inka’s therapy.
Inka is now two and Holly describes her as a funny, strong willed, cheeky, little chatterbox who is a wonderful big sister to her baby brother eight month old Ezra.
However, it has not all been plain sailing for Inka. At six months, she was diagnosed with global developmental delay and cortical visual impairment, which means her brain struggles to process and perceive the images it receives from the eyes.
At nine months, Inka started having seizures and was diagnosed with a rare form of epilepsy called infantile spasms, which cruelly robbed her of many of the skills she had been working so hard to achieve.
By the time Inka turned one it was clear she had cerebral palsy, but it wasn’t until she was eighteen months that she was officially diagnosed as having spastic diplegic cerebral palsy. Primarily this affects the muscles in her legs making it extremely difficult for her to form normal movement patterns. Inka wakes up and battles her cerebral palsy EVERY SINGLE DAY, just to be able to move around.
Whilst other children her age are playing with their toys and running around outside, Inka is enduring hours of therapy every day. Holly and John try to make it fun, but can’t escape the fact that they are attempting to get her to do something which is uncomfortable, exhausting and at times painful.
This is a photo of Inka taken in June in Rodmoor Gardens in Portishead where she is often seen stomping around in her little pink orthotic boots and her green walker as she practises taking steps. On this particular day, she had also spent a total of two hours in her standing frame which is critical for giving her legs a good stretch and essential for building strength.
Nights are still a challenge for Inka and she often wakes up asking for her night splints to be taken off because they are hurting. Her night splints are essential for ensuring she doesn’t lose range or muscle length in her ankles and calves. Although they are very important, lack of sleep could mean an increased risk of seizures and make it impossible for her to build up the necessary strength and energy to practise her walking. It’s a question of finding the right balance between making sure the splints are on long enough to do their job but not to the complete detriment of her sleep.
In this little clip, again taken in Rodmoor Gardens, Inka is fighting against the tightness in her legs with every step. She’s exhausted but determined to keep going. She’s admonishing her Daddy for trying to help her:
“I don’t want Daddy to steer, I don’t want Daddy’s hands on my walker”
Inka is desperate to be independent but all her focus and energy has to go into taking those steps and so for now, despite her protests, she needs that help from Daddy. The hope is that one day she will be able to walk this stretch of her “special park” by herself – that’s the dream!
It is through this relentless therapy and physio that Inka has learnt to roll over, sit and crawl and take those first steps with her walker.
However, the reality is that without surgery, Inka will always suffer with painful spasticity in her legs and it is unlikely she will ever be able to walk independently or for any great distance. In all likelihood she will live most of her life confined to a wheelchair suffering painful muscle spasms.
In the weeks and months following Inka’s brain injury diagnosis, her parents didn’t dare to dream that she would one day walk. As Inka has grown she has progressed far beyond their wildest imaginations and they now believe that with SDR (selective dorsal rhizotomy ) surgery, and post-surgical physiotherapy and equipment, walking and living a life without constant muscle pain in her legs is something Inka can and will achieve.
Holly and John are hopeful that Inka may qualify to have this surgery on the NHS, but she must meet very strict criteria and if she doesn’t, NHS funding will not be available, even though it will help her live a better quality life. Furthermore if she is lucky enough to receive this surgery on the NHS, Inka will need intensive therapy, physio and specialist equipment following the operation to build strength in her muscles and to give her the best possible chance to achieve her goal of walking. Currently the NHS is not able to fund all of the post-surgical therapy required and so the This INKAREDIBLE Kid Appeal was born.
However, the situation is looking very ptromising, Inka’s neurologist has been in touch and she has been booked in for Botox which is used for some children with cerebral palsy to relieve some of the spasticity on a temporary basis. The Botox is a prerequisite for the SDR surgery assessment which will determine whether or not the NHS will fund the operation. It’s the first step in what will be a long journey for Inka who faces a lifetime of therapy ahead of her, but it WILL lesson it; it WILL reduce her pain; it WILL give her the best chance of walking independently and John and Holly won’t stop until that chance is in her hands.
I said at the start that Inka’s story had moved me and it truly has. Creating this blog post and promising regular coverage on social media is a start, but I’m mulling over other ideas about what I could do to support this family. I hope you will too.
I’m so glad that people have engaged with the appeal and they most certainly have, just over £7000 since the start a month ago is something to be optimistic about, particularly in the current climate.
It has been such a very lonely journey for Holly and John who spent the first nine months of Inka’s life, when they were at their most vulnerable, scouring the internet for answers and travelling up and down the country meeting people, probably well intentioned, who promised treatments and cures that raised their hopes but had no chance of success. The donations and the accompanying messages related to the This INKAREDIBLE Kid Appeal, all go to reducing that sense of loneliness and increasing their sense of optimism.
The frustration they felt and still feel is colossal. They are quietly confident that Inka will be suitable for the surgery on the NHS but if she isn’t then it will not just be the post-surgical therapy that they need to fund but the SDR surgery as well. They wonder how this can this be when adults who suffer brain related illness are offered intensive rehabilitation.
Holly and John despair about the about the amount of money they need for all that is related to Inka’s surgery. They are already paying for private physiotherapy, hydrotherapy, walking frames, standing frames, supplements…………the list is endless.
It was this despair that led them to launching the This INKAREDIBLE Kid Appeal, as they came to terms with the fact that as determined as they were, they just couldn’t do it on their own.
They need our help, whether it’s a donation, fundraising support or just sharing her campaign. You can follow Inka’s progress on Facebook: @thisinkarediblekid on Twitter @InkaredibleKid and Instagram: this_inkaredible_kid If you would like to donate, this is the link: https://bit.ly/2YSzNb6
Here’s Inka, thanking people for the support already given. I think she might mean donations rather than decorations!