This Inkaredible Kid Appeal is raising money for our daughter Inka so she can have life changing Selective Dorsal Rhizotomy (SDR) surgery and post-surgical physiotherapy plus equipment to give her the best chance of being able to walk independently. Inka is a little marvel who has overcome many challenges in her short life, but learning to walk is going to be the toughest.
Inka is 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 and visual challenges, but she does not let this stop her.
We hope reading Inkas storey inspires you to want to help her achieve even greater things with life changing and therapy, whether it is through a donation, a purchase of her merchandise, fundraising support or sharing her fundraiser, we are grateful to each and every one of you.
Meet Inkaredible Inka
Inka was born very suddenly 9 weeks premature when her heart rhythm became extremely erratic. She was intubated and placed on a ventilator shortly after birth. Her first night in this world 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 she was very poorly, there was nothing more he could do to help her and the only option was to transfer her immediately to another neonatal unit 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.
Two weeks into Inka’s six week stay in the neonatal intensive care unit, a routine scan brought our world crashing down as we were told she had suffered extensive brain damage. At 10pm on a Friday night in early August 2017 a consultant we had never met before told us our precious baby girl would most likely have severe quadriplegic cerebral palsy and
learning difficulties and would never walk or talk. We were told that learning to feed orally may not be possible. Overwhelmed with fear and sadness that night, we promised each other we would do whatever we could to make sure her life was filled with happiness, whatever her abilities or disabilities we just wanted our girl to be happy. I remember going to bed that night just hoping she would, if nothing else, be able to smile, to just be able to let me know when she was happy, in that moment that was all I could hope for.
Two weeks after that diagnosis Inka started breast feeding and it was the first of many times that she has proved her prognosis wrong. Four months after that all our prayers were answered and she smiled for the first time.
Now she is a funny and strong willed little two year old. She loves stories (upwards of 9 a day!!) she talks our ears off all day long, she is silly, loving and cheeky as well as a wonderful big sister to her baby brother Ezra.
Sadly it has not all been plain sailing for Inka. At six months old she was diagnosed with global development delay and cortical visual impairment. This means her brain struggles to process and perceive the images it receives from the eyes. At nine months old Inka started having seizures and was diagnosed with a form of epilepsy called infantile spasms which cruelly robbed Inka of many of the skills she had worked so hard to achieve. By the time Inka turned one it was clear she had cerebral palsy but it was not until she was 18 months that she was officially diagnosed as having spastic diplegic cerebral palsy. Primarily this affects the muscles in her legs making it extremely difficult and painful for her to form normal movement patterns.
Through relentless therapy and physio Inka has learnt to roll over, sit, crawl and this year has started to take steps using her bright green Kaye walker. However, 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 and she may live most of her life confined to a wheelchair.
In the weeks and months following Inka’s brain injury diagnosis we did not dare to dream she would one day walk, but Inka has grown and progressed far beyond our wildest imagination. Both we and her consultants now believe with SDR surgery, walking and living a life without constant muscle pain in her legs is something Inka can strive to achieve.
We are hopeful Inka will qualify to have the surgery on the NHS, but she must meet the very strict criteria set out in order to release the funding. Furthermore if the NHS do fund her surgery, Inka will need months of intensive therapy, physio and specialist equipment following the operation. This is essential to build strength in her muscles giving her the best possible chance of achieving her goal. Currently the NHS is not able to fund all the post-surgical therapy required and we have therefore set up This INKAREDIBLE Kid appeal to raise funds to ensure Inka has access to the specialist therapy and equipment she will require possibly for the rest of her life.
Inka wants to walk, she tries so hard, she is determined and strong, but she cannot do this on her own. She needs your help, whether it’s a donation, a purchase of her merchandise, fundraising support or just sharing her campaign.
Thank you for helping to change our daughter’s life.