Elijah's story Our latest survey shows families raising disabled children are still struggling emotionally and financially six months after lockdown began, as well as facing continuing uncertainty about the lifting of restrictions due to their children’s health vulnerabilities. We spoke to Lucy and Allan about the impact of the Coronavirus pandemic on their family. Elijah's condition Elijah lives with his Mum Lucy, dad Allan, and nine year old sister Jemimah in Nottinghamshire. Elijah was born at 24 weeks in November 2017, around four months before his due date. Early life for Elijah was very difficult. He experienced the most severe category of brain damage (Grade 4) at birth and spent the first five months of his life in a neonatal unit. In his first 48 hours Lucy and Allan were told twice that he wasn’t going to survive and at 12 days old he perforated his intestines and needed to be fitted with a stoma. Today, he has had his stoma removed after an operation and has good mobility and is able to walk, but there have been lasting effects on his health. He has a chronic lung disease requiring oxygen at night, tube feeding (PEG), and developmental delay, something the family have been struggling with throughout the Coronavirus lockdown as they are without access to professionals and the need for advice or a diagnosis. Elijah is extremely vulnerable to Coronavirus, having reduced immunity and a lung condition. The family are among the 27% of survey responders who are on the official shielding list. Financial impact of Coronavirus The financial impact of Coronavirus has meant that Lucy and Allan have seen a reduction in their income and have had to dip into their savings. Since March, Lucy was able to work from home, but Allan, who is a joiner for the local council, lost around £275 in income each month due to not being able to take jobs where there might be any risk of contracting the virus. With both children at home full time, their household costs have risen. The loss of formal and informal support The family are among the 62% who have lost formal support and professional and medical services. The single biggest challenge of lockdown has been the deterioration of Elijah’s mental and emotional wellbeing. The strain of being in the house 24/7 has been difficult. Due to Elijah's limited understanding, isn’t possible to explain to him why we've had to stay at home. Elijah, who is largely non-verbal, has meant he has been frustrated to the point of screaming and having meltdowns. Lucy, who works two days a week, has also been attempting to home school her daughter Jemimah, which has been impossible given the physical and behavioural support Elijah needs. “Elijah doesn’t have the ability to understand this situation – that I’m doing school work with Jemimah, what is happening in the outside world. He isn't able to do something like go and get a book. His world has completely changed and he’s missed out on so much support and chances for interaction with other children which would help his development. In March he’d just finished his settling in sessions to begin nursery, the staff had just completed the feeding training and oxygen awareness, but then that’s all been taken away." Lucy explains: “The child Elijah is now is not the same as the child he was then. I think there are signs of global developmental delay or autism. For example, Elijah can have a meltdown if another child cries or makes loud sounds, he seems unable to cope with things and becomes extremely upset. If you try to comfort or hold Elijah, he becomes even more upset and gets hysterical. I haven’t been able to flag this with professionals, the nursery setting, or get any referrals or advice about what it means or how to handle it best." “I was hoping he would be settled into his nursery, but now I don’t think it’s safe or in his best interests to send him there. Instead I’ve started researching into a special needs pre-school which he could attend from three years up to into secondary school age. I’m not sure if this is the right pathway or him. I’m just watching his wellbeing deteriorate and his development stall, and not seeing the professionals who would have helped us." The impact of Coronavirus had meant that Elijah hasn't been able to see his physiotherapist, As well as this, his occupational therapist, his speech and language therapist, his ophthalmologist, the community paediatric nurse or the paediatric consultant. There are so many ways he’s been affected. For example he has one leg longer than the other which means he falls and stumbles a lot. He has special boots but he’s outgrown them, his speech and language development has stalled, we’ve noticed he is squinting, but he hasn’t had any of his eye appointments. It’s been very stressful and challenging at times. The family are also among the 63% whose informal support has also decreased (grandparents, friends, and relatives). How we've helped The family have received food parcels, had medication and Elijah’s special milk feeds through the government’s support services through lockdown due to being on the shielding list. Family Fund have been able to help with the award of a fridge freezer. The grant has meant Allan and Lucy could do larger shops less regularly, minimising risks through lockdown, as well as store Elijah’s feeds safely. Their previous fridge had been malfunctioning. Because of the increased funding from the Department for Education to Family Fund, the Pritchards are also able to make a second application for a grant, which they’re in the process of doing, in line with the family’s needs. In the past, they applied for a family break, which Lucy says is largely for their daughter Jemimah to get a chance to relax and have some attention, as Elijah’s care needs can be so demanding she feel she is often not given the attention she deserves. Impact of Elijah's condition on the family Lucy says the strain of Elijah’s condition has intensified through the Coronavirus lockdown dramatically. She has rarely felt relaxed or able to think clearly, and there have almost been no opportunities for a break. There is also the mental strain of knowing how incredibly serious the virus would be to Elijah. Allan says: “With it attacking the respiratory system, the chances that Elijah would survive the disease is very slim, especially with his low immune system and chronic lung disease.” “Even before lockdown, all this is incredibly hard to take on board, and last year I went through a bad patch with my own mental health. It’s silly things, like thinking I’ll never be able to have a conversation with Elijah, or go for a drink with him when he turns 18.” Lucy feels that families with disabled children should be more directly addressed by government, and there should be a focus on their needs and the risks. Measures such as special time slots for activities for shielders would help, as would more understanding from the public out and about when disabled children display behaviour that seems unusual to them. “Getting looks and hearing whispers if I have to keep Elijah in the buggy to keep him safe and he’s getting upset isn’t very nice. When he needed oxygen tanks in the day I felt like people accepted it more because they could see ‘oh he has a disability’ but now it’s not as obvious to them. There is obviously a risk in Jemimah being back at school and me working again, but I can’t mentally think like that. At present, children are back at school, and I need to be back at work. We are just trying to take each day as it comes.” Read our latest survey on the impact of Coronavirus on the families we help or more stories from our families here.