Elsie'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 Kayleigh and Nick about the impact of the Coronavirus pandemic on their family. Elsie's Condition Kayleigh and her partner Nick live near Shrewsbury with their daughter Elsie, who is nearly three years old. Elsie has a rare genetic condition called Smith-Lemli-Opitz Syndrome (SLOS) for which there is no cure and limited treatment. Smith-Lemli-Opitz Syndrome is a rare genetic condition which affects multiple parts of the body. People who have Smith-Lemli-Opitz Syndrome are unable to make enough cholesterol to support normal growth and development, both mentally and physically. As a result Elsie has complex medical needs and has developmental delay, very weak muscle tone and delayed growth, and is fed through a tube. She has severe reflux and can vomit up to ten times a day, has a visual impairment with a cataract in her right eye and a cleft palate. She is very small for her age and struggles to gain weight, she is unable to sit up unsupported, and unable walk, talk or play independently. Kayleigh is a qualified social worker, but after attempting to return to work part time in 2019, made the decision to become Elsie’s full time carer at the start of the year, due to her 24 hour care needs. “Elsie is under the care of approximately 20 different professionals and on average has between four and five appointments each week. This often involved travelling in excess of 200 miles every week to see the specialists she needs.” They are among the 27% of families who responded to our survey who are on the official shielding list, and have not had anybody in or out of the house since March. Finances Becoming a one-income family meant that the family became eligible for Universal Credit. They have a small amount of savings and had been getting by, but due to Coronavirus, have recently learned that Nick, who is an engineer, is being made redundant next month (October). They are now extremely concerned about how they will pay their household bills and mortgage after this date. Falling formal and informal support The family are among the 62% who have lost formal support and professional and medical services. Elsie has missed all of her direct weekly therapy sessions, including Physiotherapy, Portage and Conductive Education, however we have been able to access these sessions via telephone or video calls. She’s also missed numerous direct appointments with her specialists regarding her eyes, vomiting and feeding. The family are worried about the impact that this could potentially have upon Elsie’s health and in terms of possible regression without her intensive therapies. More than half of parents who responded to our survey said say their child’s education, physical and mental health, relationships, development, behaviour and emotions and wellbeing have all been impacted negatively by coronavirus. The family did have access to respite care at the hospice, but haven’t taken it up before now, and haven’t been able to since lockdown. The family are among the one in five survey responders who went without medicine through lockdown. The local chemist effectively ‘closed down’ taking their phone off the hook. This meant Elsie couldn’t get medication for glaucoma, a condition affecting the optic nerve, which can cause rapid deterioration in vision and even blindness if it is not treated promptly. Kayleigh says she wants to see better guidance from the Government on this for families. We need on-going support to access medications. "This has proven a massive challenge throughout the lockdown and as a result our daughter has missed vital medication.” They are also among the 63% informal support decreased (grandparents, friends, relatives) They have been and continue to feel unable to allow their grandparents, friends or other relatives to help care for Elsie due to the risk of Coronavirus. How we've helped “Family Fund granted Elsie an iPad last year, little did we know at the time just how valuable this would be during lockdown! It’s enabled Elsie to engage in weekly story time with her friends, engage in virtual therapies and even do her ‘homework’ tasks via apps. This year, Family Fund awarded Elsie a playhouse. This has been invaluable for us all during lockdown as it has enabled Elsie to spend time safely outdoors. Elsie suffers with photosensitivity, which means she burns very easy, but her playhouse has meant we can all spend time in the garden knowing she’s safe. Shielding/lockdown “Having to shield has undoubtedly left us feeling very anxious, isolated and exhausted. The worries about how we’ll manage financially when Nick comes out of work, will we be able to get Elsie’s medications? The risk of regression or deterioration in Elsie’s health due to cancelled or postponed appointments, and the concern about how we can continue without a break is quite simply overwhelming. We are tired and there have been many times I’ve sat and cried or woke up wondering how much longer we can carry on like this. “We haven’t made any changes to what we do since we were informed that Elsie no longer needs to shield, because in our opinion, whilst the virus is still around, Elsie still remains at risk. We’re extremely anxious about leaving the home with Elsie and believe there has been little support about reintegrating those who’ve been shielding back into the community. It would be good if measures could be introduced to help people like us, such as allowing special days or allocated times for families who have been shielding to access services without worrying about other members of the public not adhering to the 2m rules”. Read our latest survey on the impact of Coronavirus on the families we help or more stories from our families here.