Proud Winners of The Queen's Award for Voluntary Service

Our Little Hero Award Finalists

 

Our Little Hero Award – Finalists

ZACHARIAH FOLLOWES

Zachariah is a 4 year old young boy who was born with a very rare gene mutation, (Change in the TUBB2B Gene) and therefore has various life limiting conditions, including epilepsy. He is a total King as he gets around in his wheelchair and totally loves exploring, and enjoying the outside world. Epilepsy has been a huge struggle since he was a few days old, but he continues to get the best out of life, with a huge smile on his face. He's recently started school, despite epilepsy getting worse and him becoming more tired, he is doing extremely well and having everyone fall in love with him. He's a social bee and has impacted so many lives, mine included. He's shown me what life is, and that is to treasure every moment, take time to just be and always look on the bright side!

 

BRUNO FRANCIOLI

Bruno is 4 years old and he was diagnosed with an extremely rare disorder. He is in and out of hospital with many issues. His Mum is very proud of him as are we at Amy & Friends.

When Bruno was 8 months old his Mums started to have concerns about his head control and after several trips to the GP they were finally referred to a paediatrician who confirmed their worst fears. Bruno had problems with:

• Small head circumference
• Very small front fontanelle
• Head control
• Developmental delay

His treatments began:
• Occupational therapy
• Physio therapy
• Speech and language
• Neurology
• Portage
• Genetics

Bruno is now 4 years old, his developmental age is 0-3 months, he has regressed as he used to be able to smile, roll over, laugh and see. Bruno was registered as legally blind in February 2018 but we know that he can definitely see lights and have recently established that he likes red lights. He can hear but to what extent we are unsure, he gets a lot from music and touch. He loves cuddles.

Bruno has been hospitalised many times due to severe seizures and numerous itinerary tract infections. He has also started to have absent seizures and his little body is constantly moving.

Bruno had an NG tube fitted 2 years ago following a prolonged period of illness and was then fitted with a PEG tube for feeding. He is now nil by mouth.

Bruno began having in excess of 100 seizures a day, arching his back like he was in agony and screaming all day and night, he was inconsolable and his body would never rest his involuntary movements were extremely severe and it was nearly physically impossible to hold him safely, prior to this Bruno was a very happy relaxed little boy in spite of his diagnosis of microcephaly- The only medication he needed was calpol every now and again. He was put on diazepam and baclofen although he was on the maximum amount for his weight they were not as effective as hoped.

Bruno was diagnosed (via the 100,000 genome project) with a condition that less that 10 people have worldwide.

No one knows what the future holds for this beautiful boy but we are so grateful to have him in our lives and appreciate every day with him.

Bruno is a very brave little boy that has a very rare neurodegenerative condition- we wasn’t aware Bruno was poorly until he was 8 months old we took his to the doctors about concerns of his head control and was told that either his brain wasn’t growing or his soft spot had fused together to quickly preventing his brain from growing- sadly it was his brain not developing Bruno has Global development delay Svi Severe movement disorder Severe epilepsy Gastrostomy fed Non verbal Sadly I could list a lot more, Bruno has the development age of 0-3 months- any skills he developed have been robbed from him by this evil genetic condition that is yet to be named- there are only 9 known cases in the world Up until Bruno was 15 months old he had his difficulties but was healthy but that changed over night sadly- his paediatrician has predicted his life expectancy of 5- he has spent a lot of time in hospital over the last 2 years and has been through so much pain- he lost the ability to smile last year and will only smile when it is forced during a seizure- he is such a fighter and although we have thought he has been at the end of life several times he has defied the odds a fought back, Bruno started Millwood in September but isn’t attending at the moment because he is very vulnerable and picks up everything, they are going to start letting us FaceTime during activities so Bruno can be involved- to the people closest to Bruno we understand him through the noises he makes- he really is an amazing little boy everyone that meets him completely falls in love with him. Bruno is my son!

 

NYRA OBERE

Nyra was diagnosed in April this year with a stage 5 Wilms kidney tumor chemotherapy treatment was needed immediately 13 weeks into the treatment we were told nyra needed more intensive treatment including radio therapy . Nyra had to leave nursery where she had made lots of new friends because she would be prone to picking up infections and couldn’t risk being poorly and not being able to have chemo. Nyra's mummy had to leave her job facing financial worries whilst juggling hospital appointments, overnight stays and ensuring Nyra’s younger brother aged two years was cared for.

This was such a difficult time for Nyra she had to deal with being isolated from her friends, lots of hospital visits to have aggressive chemotherapy and feeling poorly/ sick. Her beautiful long curly hair has all fallen out which as any lady will understand this is very difficult to deal with especially at such a young age. Nyra is so brave and courageous facing everything that comes her way with a huge smile on her face.

She has now has one kidney (the one that was most damaged)has been removed, she also had scarring from her right kidney removed. The New treatment (Proton Therapy) is to target the aggressive cancer cells found in her body after her surgery this treatment started in August which is a three week cycle and involves being put to sleep every day for three weeks for targeted therapy. Nyras chemotherapy will continue until March next year depending on results to check the cancer is not spreading and is being contained/eradicated and to destroy all cells in her body that could carry the aggressive disease.

It is every parent’s worst nightmare to be told that their child has an aggressive form of cancer. The whole family have pulled together at this challenging uncertain time to support Nyra through her journey to beat this.

This treatment is intense for anyone to deal with especially a three year old little girl!

Nyra never complains she just accepts what needs to be done. She remains happy, confident and sassy. In my eyes she is a true inspiration to everyone she meets.