A lot has happened since my post which is not uncommon in the life of a Hurler's child. While Chiara has remained at Primary School currently in primary 5 she has watched her eldest brother, Joshua leave home and take up a new life in Dundee while her other brother Lindsay, left secondary school and went into further education at college. How time has flown and whilst I sit and take in these lifetime changes my boys have achieved I long to slow time down. The life of a Hurler's child is short lived and the coming years are not known to us, as they are to anyone however, for us we know that every year that passes is another blessing gained. Lock down to us is the best way to keep Chiara safe and healthy however, I cant help feeling that every week that passes it's another week that we have lost gaining memories with our girl. Weeks have passed since she has seen Grandparents, Uncles, Auntie's, cousins, close friends and sadly her brother. The only way of contact is the gift of technology which allows her face to face. Regrettably in, 2018 myself and Chiara's dad decided it was time to go our own separate ways, pressures of life and stresses we lived under made it impossible to continue. However, Chiara has accepted this change and has continued to flourish and adjust. Sadly because of this lock down Chiara is unable to spend valuable time with her dad due to risk of infection and sees him merely through a window or from a socially acceptable distance which is heartbreaking as every day having Chiara in our life is a blessing.
In June 2017 our community galaday was held and we were so happy that Chiara participated in this as Fairy, this was a day we thought we could never have seen. To have her take part in such a big event with all her peers and see the enjoyment on her face there are no words. It was a proud day for us all as a family and memories that will last forever.
In December 2017 Chiara became very poorly and was admitted to hospital. There was no indication of the problem and Doctors were baffled by what could be causing her severe drowsiness and inability to carry out every day movement, she could not eat and was barely awake which lasted for 48 hours. I can remember thinking that this had been the first time since her transplant that I was genuinely scared this was the end for my girl. This was something out with my control, usually I would have confidence that diagnosis would be made and treatment commenced however, on this occasion I had no faith. It broke my heart to watch my girl lie lifeless and have no idea what way this would go. Then after 48 hours in true Chiara style she sat bolt upright in the bed and asked for a 5 item breakfast, yes she was back and within 24 hours she was discharged. This is what happens in the life of Hurler's children every day things can change so fast. We left hospital not knowing what had consumed her energy for those 48 hours however, only glad she recovered.
In April 2018 Chiara, myself and others took part in a major event, the Glasgow Kiltwalk to raise funds for a charity very close to our heart. It was a small walk but it allowed Chiara to participate and feel the sense of achievement that so many others feel when taking part in events. These are things that are all too often taken for granted but for Chiara this was a major life achievement.
Whilst Chiara continues to flourish I can see she has deteriorated in other ways sadly. Her mobility at times is troublesome with pain and reduced movement. She has lost her sight partially in one of her eyes and her hands have curled even more than before and she suffers pain most days. Her hips in the morning are stiff and sore however, this girl never complains which makes me humble to think what a small child like her can endure and still remain positive.
Chiara took up ice-skating for a while and loved it however, sadly her knees did not and this was short lived but I cant tell you how happy and proud I was to see my girl have that time on the ice mixing with other children. She attended regular swimming lessons every week and loved them with nothing holding her back.
In October 2018 our very good friends Emma and Linda organised a fundraising event to raise money to buy Chiara a specially adapted trike to allow her freedom. Although Chiara has a wheelchair to get around she is not keen to use this therefore a trike was felt to be the ideal solution.
The charity fundraiser was a sell out, everyone attended in fancy dress and the night was amazing and enjoyed by all. The total amount raised exceeded £5000 and no matter how much I say thank you to every single person involved I would never be able to achieve the gratitude I felt and the overwhelming feeling of love for Chiara that so many people around us were willing to help. We have always known how much Chiara has touched the lives of so many people however this to me was more than we could ever have known.
Two days following the fundraiser Chiara was admitted to Glasgow Children's Hospital for an arranged operation on her knees. She would receive 8 plates bilaterally and these would remain in place until her knees had straightened. Because of the turning in of both knees Chiara had come to rely on a K-Walker for mobility and stop the falls. Another operation is a frightening time as Hurler's kids do not do really well under anaesthetic due to small airways. However, Chiara embraced this and a few hours later we had her back on the ward. She wanted home so desperately that she constantly asked staff when she could leave until she was told once you can walk 6 steps we can let you go. Well, this I knew was the worst thing to say to Chiara as she would take this as a challenge. Within minutes she was "get me up Mum" and there she tried, tears streaming down her face in pain and a body full of Morphine she attempted these steps until she completed. To watch your own child endeavour so much pain and have so much determination is heartbreaking but it is something that I suppose we are getting used to with Chiara. She returned home and continued to progress until she no longer required the K-Walker and was walking alone.
Chiara's hearing was always a problem and from 5 months following being diagnosed a deaf she was fitted with hearing aids. However, as the years have flown by her hearing improved, she no longer required the aids and to date she has achieved passing her hearing tests hearing aid free. A miracle some would say.
As time passes I reflect on what has been and what has still to come and I appreciate nothing is set in stone, nothing is promised in this life and as Covid 19 consumes and affects everyone of our lives you realise that we are all in the same situation living in fear of something. To me and my family living with Hurlers and having endured 2 bone marrow transplants which leaves your body immuno-compromised is like living in a world with Covid 19 every single day of your life. Since Chiara's transplant all those years ago we wish people would accept its safer to social distance from her, every day we step out, go to school have visits from family and friends is a risk of infection to Chiara. Therefore Covid 19 restrictions to us is normal life for Chiara as we live every day in fear of infection.
Due to the restrictions in place all of Chiara's hospital appointments are on hold or are being carried out over the phone. Regrettably her 8 plates that are due to be removed from her knees is unable to be carried out and she is awaiting carpal tunnel surgery however, at present we eagerly await lock down end in order clinical duties can be resumed.
#staysafe
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