We want to showcase the strength and courage of Richard House mums, by sharing Sara’s story. Sara, mum to 14-year-old Abdullah, is a regular participant of our Mums4Mums support group. This twice monthly group offers our mums a safe space to learn from common experiences, receive peer support and enjoy quality time relaxing with friends.
Sara is a trained OBGYN doctor and moved to the UK from Pakistan following her medical training. She was soon married and decided to take time off from work to start a family and support her husband in his training. Sara gave birth to a daughter, followed by her son, Abdullah, whose arrival was life-changing for the family. As a baby Abdullah was frequently unwell with chest infections, leading to multiple visits to A&E and subsequent hospital admissions. This was a very difficult time for the young family, who had to juggle focusing on the wellbeing of their sick son, as well as the welfare of their young daughter. After multiple tests Abdullah was diagnosed with a life-limiting congenital condition – Pompe Disease. At the time of his diagnosis he was only one in ten children in the UK with the diagnosis and most were not expected to live past the age of two – the age Abdullah was, when his diagnosis was made. Doctors prepared Sara for the worst and she was told almost immediately that Abdullah wouldn’t survive into adulthood. For a young family with optimistic plans for the future, this was a shocking reality to cope with and Abdullah’s diagnosis impacted every aspect of life for Sara.
Despite Sara’s medical training, both she and her husband had no paediatric skills and yet were suddenly required to adapt their roles as parents to full-time carers, as Abdullah needed 24/7 care to monitor his breathing. They also had to plan in advance for the welfare of their eldest child as both parents were needed to attend multiple hospital appointments, plan for frequent hospital admissions, and most significantly they also had to think about the impact of this change on their ability to work and the financial stability of their family. In spite of all of this, both parents also had to come to terms with the unthinkable possibility of losing Abdullah in the near future.
Richard House exists specifically for families such as Sara’s, offering them a beacon of light at a time they need it the most. Sara and her family were referred to Richard House from Great Ormond Street Hospital. The nurses noticed the young family were struggling to cope with the incredible pressure of their new care responsibility. Sara was skeptical at first due to the popular misconception that hospices are a place people go to die. However, because they desperately needed additional support, she reluctantly agreed to visit Richard House for at least a tour of our services.
“We just came here to have a tour, we visited the Day Care Centre and the residential unit. Initially, we started coming for day activities and for any trips that were offered to the whole family. Then slowly and gradually we started using the residential area.”
Due to the complex nature of Abdullah’s diagnosis, the family made use of our residential services while staying in one of our two family flats, so they could be near their son. Sara didn’t want Abdullah to feel he was being abandoned by his family, but also recognized their need for some time to rest. Being nearby meant that the Care Team could support Sara with information about her son’s diagnosis and answer any questions. Particularly useful were the 12 days of respite offered per year to help Sara prepare for her junior doctors’ exams as she continued to work in the NHS, pursuing the career she had dreamed of.
Twelve years on, Abdullah is still with us. He is bubbly and curious about the world around him like any other teenager. Abdullah’s siblings are active members of the Richard House siblings support group – they attend social events at the hospice and go on day trips to the seaside and theatre. Unfortunately, due to the stress of raising a life-limited child, Sara and her husband’s marriage broke down and she was unable to continue work. She is now a single parent with three children and a full-time carer for Abdullah. As a family Sara and her children attend various family bonding activities and events through Richard House. At home the family socialize by playing board games and watching their favorite cooking show MasterChef.
As a single parent and a mum with a life-limited child, Sara has a very busy lifestyle and mornings at Sara’s house are anything but quiet! Because Abdullah has to be hooked up to a breathing machine at night, Sara functions on a limited amount of sleep with lots of disturbances– attending to routine breathing machine checks, suction and nappy changes. A typical day starts at 4am, firstly for Abdullah’s medications and wash to prepare him and his breathing equipment for school. Next on her list of morning duties is attending to the morning routine of the other children, one of whom has severe asthma. Throughout the day Sara goes on three school runs, plans her diary for social care appointments, prepares the evening meal and responds to child care emails and calls. About her lifestyle Sara said:
“I have to go out for school runs multiple times a day, bring the children back home, feed them, spend some time with them, then night routine kicks in. So, it’s very hectic, and people don’t know that we have to go through all this.”
With the support of Richard House, Sara has been able to cope with the challenges that come with her care responsibility in both her personal and family life. In addition to our respite services, our Mums4Mums support group has been a significant source of support to Sara. When asked what Mum’s group means to her this was what Sara told us:
“Mum’s Group means a lot for me, because we come here, we share our problems, difficulties, and we get advice from each other. We get moral support, we think that we are not alone. We find that there are others in the same situation and we try to help each other out.”
Sara at Mum’s GroupThrough the Mums4mums group, our mothers have learnt new hobbies and skills, such as flower arranging, jewelry and soap making. Alongside fun activities, we offer counselling services to ensure that mums are able to cope and provide the best care to their children. With the support of our corporate partners we intend to run more fun and exciting activities for our mums in the future, because we know how vital respite and self-care are for their emotional wellbeing. During our conversation, Sara disclosed the personal impact of our mums’ group to her wellbeing: “It’s very good for our mental health. If you are feeling better then you can do your caring role properly, because you need to charge your batteries as well.”
Even though it takes precious time out of their busy schedule and it can be complex to fit this time into their already full diary, most of our mums attend the Mums4Mums group regularly for self-care purposes. Time out to socialize with others and forget about their daily struggles for a short while provides a huge boost to their mental wellbeing. Independent of Richard House, our mums communicate with each other via a WhatsApp group and have become firm friends and advocates for each other. This act of community further emphasises the need for such a programme within the services offered at Richard House. It costs £6,500 a year for Richard House to provide this bi-monthly holistic support for the mothers of our children and young people, whom in most cases are the primary care providers in their family.
It’s very unfortunate that we’ve had to cancel our Mums4Mums group temporarily, to keep in line with the governments COVID-19 safety procedures. As a young mum Sara explained that she was willing to sacrifice her “me-time” to focus on her family – getting to know her new husband and in-laws in the hope that she would have time for herself in the future. Sara’s hope never became a reality and she struggles to take time out to treat herself because of her care responsibilities. This is one of the many reasons why she values the time she spends with the other mothers in our Mums4Mums group. Sara is very optimistic about what the future holds for her, and very grateful for the support she receives from Richard House. She sends this message to our donors and supporters:
“To those generous people who are supporting Richard House, you’re doing a really good job! You are you source of light to those people who have a kind of grey, darkness in their lives. Continue your great effort in supporting Richard House, because if it’s not there, it would be a real disaster. We wouldn’t be able to survive, it’s very important that Richard House exists.”