We have set up this fundraising page for my gorgeous daughter Maisy. Please read our story below...
Maisy is 13 years old.... She was born 9 weeks early whilst suffering two bleeds in the brain. As her mummy, I had a severe case of pre-eclampsia which resulted in an emergency C-Section to save both of our lives. Maisy was a tiny 2lb 12oz when she was born and made only a tiny squeak before they whisked her away from me to SCBU the special care baby unit. I had no idea at that time what was in store for us and our brave little baby girl.
As I was so poorly myself I was unable to see her for 24hours after the delivery but her Daddy stayed by her side and relayed her progress to me. When I did finally get to see her it was a sight that I will never forget.
Our beautiful little girl lay there, so tiny, so vulnerable... all wired up to all these machines with bleeps and buzzers everywhere - it was an incredibly scary thing for any parent to behold.
Maisy had to have a little help with her breathing for about a week with CPAP and then, slowly, she started to breath on her own. Over that following 6 weeks she had lots of up and downs. She had to have extensive light therapy for severe jaundice, three blood transfusions, severe reflux and she now and again decided that breathing was a little too hard for her...so she kept holding her breath. I am sure it was just so to keep us on our toes (!) but nonetheless very worrying for myself and her daddy.
At 2 weeks old they performed a routine ultrasound on her head and discovered the hemorrhages. It was touch and go for a while and we were prepared for the worst... but Maisy continued to amaze and the bleeds stopped and even shrunk a little. We believed that she was going to be ok and at 6 weeks old the time came for us to finally bring our baby home. At just 3lb 9oz, she was still so incredibly vulnerable, but it was an amazing, if incredibly frightening one.
Over the next few months we started to notice little things about Maisy that she wasn't able to do. She didn't seem to be developing like they told us she would. The first thing we noticed was her vision. She was unable to focus on anything our faces or toys etc. and so we were referred to an ophthalmologist. After a lot of examination we were told that Maisy was in fact Blind!!! From that moment the world stopped turning for us and all we could hear were muffled voices and the word BLIND going over and over in our heads. We came home totally devastated and the fears for our tiny little baby started all over again.
There was further news on the way....
She started to have seizures at 9 weeks and was diagnosed with a severe form of epilepsy called Infantile Spasms - she was having over 200 hundred a day.
Then the cerebral palsy was diagnosed after an MRI scan and a long stay at the Evelina Childrens Hospital in London. This is where we were shown her horrendous MRI scans and explained the abnormalities that Maisy had and what the future was likely to be like for her. Our lives had changed forever. We had just become new parents and felt like we had to become nurses and doctors overnight. The uncertainties of the future scared us so much. Little did we know that 13 years later our tiny little baby girl would be like she is today! She is a true inspiration and despite all of her disabilities she is an amazing , strong, courageous, beautiful and simply gorgeous little girl. She has been through so much already and made her own little milestones. She works so hard at doing things despite the constant hospital and therapy appointments she has to endure and the hundreds of seizures and illnesses that she has to battle. Due to her problems, she now has a dislocated left hip and right shoulder which is mainly because of her lack of mobility and the severity of her seizures. Surgery is not an option for her as the risks are too high and the success rate is only around 10% - which is not even worth thinking about. She is also very prone to chest infections and other respiratory problems which make her feel very poorly. She also recently been diagnosed with scoliosis of the spine too .
To manage these conditions and to enable us to give her a quality of life and to try and prevent further deterioration she has to have very specialist pieces of equipment and sensory items. Over the years we have always struggled in funding these and as she is getting older and growing up these items have become even more expensive. Maisy has been sometimes been left without these vital things for months; which is putting her at risk all of the time. Our wish is is to create ongoing funds so that we can purchase these items as and when she needs them. We have been very lucky over the past 9 years where local people and organisations and charities helping us fund some items but as the cost of things have increased and the larger the items are getting, the target amounts are a lot harder to achieve now.
We home educate Maisy and despite numerous attempts in getting help with this, we do not receive any help from education at all, so the funds will also enable us to buy the necessary resources for this to include days out and music therapy and hydrotherapy sessions which have such an amazing and positive impact on her. So please help us make this possible and give her these moments of enjoyment.
I would like to mention the amazing support my husband and I have had from our family. My dearest mum tragically passed away in October 2012 and was there for us every step of the way she helped us be the strong people that we had to become for our little Maisy. We miss her every single second of every single day. She adored our little Maisy and is heartbreaking that she is not apart of her anymore. To my amazing dad who has kept us strong too especially since losing mum. And to my amazing sister who is my rock and to all of the rest of our family and friends who have stuck by us through these past years. We love you all! xxx
Please, if you can help with even the smallest donation it would be much appreciated.
Please help us to provide our amazing Maisy with these vital items of equipment and therapy... so that she can continue to amaze us all!
Thank you for reading our story and thank you for your donations.