Get Danny (13) home after brain tumour heartbreak

Our Daniel

Daniel was a healthy thirteen year old boy living at home with his mum (Julie), dad (Nigel), and his two sisters Emily and Charlotte.

Danny was very outgoing, charming, and confident. He was very sociable, and

known locally by everyone. He loved to stop for a chat and would always say good morning to people, whether he knew them or not.

He was a very active member of the cub and scout movement, enjoying camps and other activities. He was also very active in his school life being a respect ambassador and a member of the school council.

His faith was also very important to him, helping out and walking in the annual village procession of witness. Dan would also assist the priest at the local church as an alter server.

He had a love of singing, dancing, telling jokes and stories. He loved his skate board, scooter and bicycle and was never off them.

He has many interests: palaeontology, lego, reading, action figures, cars, planes and playing numerous different sports, and following his first love Manchester City Football Club.

October 2022

In late October 2022, his mum took him to the doctors with flu type symptoms and a sore throat, he just seemed under the weather. The doctors diagnosed Dan with a cold and his mum was told if symptoms were to persist after 72 hours to bring him back and they would prescribe antibiotics. The symptoms of the cold continued along with a slight lack of balance, and so his mum took him back to the doctors and was prescribed antibiotics for tonsillitis and an ear infection.

The symptoms did not improve, and 72 hours later, after the family evening meal on the 04/11/22, Daniel went to his bedroom to watch some television and play with his action figures. His parents had a discussion, and decided something needed to be done, and Dan was not getting any better as he was still unsteady on his feet and his symptoms were the same.

Diagnosis

The next day, 05/11/22 , Daniel along with his mum attended Whitegate Drive walk in centre, in Blackpool at 9am . After a seven hour wait, and after his mum asking for him to be checked properly, he was sent to Blackpool Victoria Hospital for further assessment. Danny and his mum arrived at 4pm and was kept in overnight and had the relevant tests, including a CT scan. The following morning, Julie was told that Daniel had a mass on his brain and it was probably a tumour. He was then blue lighted to Royal Manchester Children’s Hospital on the evening 06/11/22 and he has not returned home since.

Over the past year, he has had many operations. In November 22 Dan had a biopsy on the tumour along with further tests. He was diagnosed with a low grade glioma in the centre of his brain on his brain stem. On the 24 November 22 he had a portacath fitted in his chest, ready to start an 84 week chemotherapy treatment plan. Unfortunately, Dan had a seizure whilst being sedated, at this point Daniel’s condition rapidly deteriorated , physically, cognitively and with his communication.

By the 23 December 22, Danny had acquired a movement disorder down his left side, tremoring like a parkinsons patient, he also became completely non responsive and could not be roused. As a family our worst fears had become reality, with our healthy boy no longer waking up from a call of his name or tap of his shoulder. The medics explained that the brain tumour was pressing on the brain stem and without an emergency operation to debunk the tumour, Daniel had days to live.

The operation was carried on the 23 December 22 and lasted 12 hours. This was not a success. The family were informed that Daniel had suffered a stroke and important structures in the brain had been compromised. Dan was transferred to intensive care unit, where he remained on a ventilator. On the 13 January 2023, on our daughters 18th birthday, the family was told Daniel was incredibly poorly and may pass away. Daniel was non responsive for 3 months and needed help to breath with a ventilator. Slowly, Danny started coming back to life and the ventilation started to be decreased. After being in the intensive care unit for three and a half months, he was transferred to the high dependency unit (HDU). Daniel spent four and half months in the department. Daniel was reliant on oxygen for seven months in total.

Whilst in HDU, occupational therapy started to work with him, hoisting him into his therapy chair every day to try and build his strength.

In May 2023, Daniel started to deteriorate again and it was found that he had hydrocephalus, a build up of fluid on the brain, and so he had his second emergency operation. This time it was successful, and he started to improve again slowly.

The current situation

Dan is currently on a respiratory ward, as he requires non invasive ventilation at night. He is hoisted for all transfers and needs help with all aspects of his personal care and is fed via a naso-gastric tube.

He can see, hear, identify who people are and smiles when he is happy. Danny is non verbal, therefore he struggles to communicate his wants and needs. He is unable to sit independently and needs support via his wheel chair or special sitting out chair. His bed has a pressure relief and sleep system to stop sores and to keep his body aligned whilst asleep. He is about half way through his chemotherapy regime of 70 weeks, (as the original 84 weeks was felt to be too aggressive as he was so poorly) and he constantly suffers from extremely high temperatures and fatigue, even though he must be feeling so unwell, over the months there has been small improvements in his presentation, which is more than we could have hoped for given his very guarded prognosis by his medical team.

The impact

The impact on family life has been immeasurable. Daniel’s older sister Emily has learning difficulties and was diagnosed with psychosis being sectioned in August 22 under section 2 of the Mental Health care act and then section under section 3 in November 22 which has meant from August 22, family life has been fractured and far from normal.

Mum now lives at the hospital supporting Daniel, Dad has gone to back to work for 4 days a week as there is no financial support. Emily is now out of hospital but requires a lot of reassurance and support from family members. The remaining three days of the week, dad and Dan’s sisters try to support both mum and Danny at the hospital. This routine has been our lives for the past year: increasing fatigue, stress and anxiety between us all.

Our ask

The money that we hope to raise, along with the monies generated from the sale of the family home, would be used to buy a more suitable property that could be adapted to meet Dan's complex medical needs, and to further his rehabilitation. The property would be adapted by the local authority, but they will not help us financially to move.

To be discharged from hospital Daniel needs a suitable environment, which cannot be met in the current family home, as the property is a small terrace house, which sits on a very small plot. This means there is no possible space to extend. This complicates and compromises the proposed adaptations with no consideration to Emily’s additional needs or family life. The hospital has carried out assessments and concluded conservatively that we would have a shortfall of £100,000 to get Danny home and make our dream a reality.

Danny would need his own space which would comprise of a bedroom, adapted bathroom, carers facilities (he needs 24hr support) and most importantly somewhere where he can socialise with friends and family.

Our little family has always been very close, and the thought that Daniel may never be able to come home is something we cannot consider or think about, and that’s why we are asking for help. Daniel needs to come home, where he belongs. We feel this would aid his recovery, mental health and quality of life.

Hopes for the future

Our hopes for the future, is that we can be together again with Dan enjoying life and making memories with the hope that he continues to improve with the right support and rehabilitation.

Our wildest dreams would be that he becomes verbal with small words, yes or no, to tell us his wants and needs and to gain enough movement in his upper body to control an electric wheelchair to give him some independence back.

As a family, we thank you for taking the time to read this. Your support means more than anyone would ever realise.