My name is Heather and I am the mother of Ceri, our seventeen year old daughter who received her first Tookie Garment in May 2019 and her second Tookie Garment came as a gift through Tookie via a company called Renal Services UK who have very kindly sponsored Ceri to receive Tookie replacement garments for the next two years.
We received the second garment for Ceri just before Christmas in clinic at Alder Hey Children’s Hospital gift wrapped in Christmas Paper from Tookie which she opened there and then – lovely touch Tookie!
You will find on the Tookie web site a testimonial from me which I wrote late last summer, and I thought it would be timely to update you on my family’s experiences since then.
So, here are my thoughts, observations and activities six months further on and how Stephen and his amazing Tookie team have quite literally made such an unbelievable impact on our lives – I call it a transformation.
We were told for seventeen years by everyone who we came into contact with who looked after Ceri’s health that nothing could be done to stop her pulling her Gastro Mic-Key Button, not that they really believed me anyway, but then Stephen stepped into our lives and we have not looked back; and I no longer have I had to ask that question again.
Did I mention that we are a Welsh speaking family? No, well you need to know this as this becomes relevant in a minute.
Not that 2019 was any more difficult as a family but as the year unfolded it became different.
Stephen sent us design ideas and prototypes which did not work. We thought that here we go another dead end until May 2019 when through the post a new sample appeared. We had told Stephen that the only thing that really worked was a wet suit that prevented Ceri from grasping her button and the new garment incorporated this idea by embedding Neoprene into the front of the garment so she could no longer grasp the button nor her Catheter Line. Although we were initially still sceptical, as the days turned into months that Ceri was now wearing the garment in purple, her favourite colour and she was not able to pull her Mic-Key Button and to date that remains the case it is why I call it ‘transformational’.
Why is 2019 different from a family perspective? Well we feel that part of our lives has returned to normal; what Stephen calls #ALifeMoreNormal.
We love our daughter very much and adore her in every possible way, but madam challenges us mentally. The Gastro Button pulling had become her controlling mechanism and one of us had to stay by her side to prevent this but wearing her Tookie garment she could no longer pull the button but importantly forgot about it.
As our confidence built to leave Ceri’s side, I was able to do new tasks like answer the telephone if no one else was around – it sounds obvious I know but these simple tasks where previously prohibited.
My daughter seems to be more content in herself. She uses verbal sounds and points at objects now instead of pulling at her Mic-Key Button when she is asking for something. This means we; the family have more time for things we love. We don’t have to run across the room to get to her side, often late because her button would be out causing her harm.
My passion is baking, and I have been baking for Wales! I have been baking cakes since Ceri has been wearing her Tookie Garment including over 100 bara birth (welsh fruit cakes) which I have sold and raised over £500.00 for Alder Hey Hospital Charity and the special needs school she attends – my part of giving back – I believe it is good to give to receive.
Stephen calls most weeks to check on Ceri and the continued effectiveness of the Tookie Garment which is lovely but I fear that I cannot find the words (not being Welsh has any bearing) to express our families gratitude to Stephen, his amazing Product Designer Khloe and Garment Designer Carla who took a doubting family to a firm believer with their continued efforts to find an answer.
I have watched his new designs for children with Enteral Needs develop which started with Ceri with great interest as I know that they will have a massive impact on families like mine. Stephen calls it ‘Patient and Family Engineering’ towards #ALifeMoreNormal – I call it a transformation – or very simply a blessing.
Heather, Ceri’s Mother.