Uqbah Muhammad, 13, from West Yorkshire, England, recounts her struggle with several health problems and her desperate search for a kidney donor who could save her life. She describes her personal experiences and the stress she is under at such a young age.
My name is Uqbah Muhammad, and I am 13 years old. I live in West Yorkshire, England, with my mom. My mom is a single parent, but I and my mum are like best friends; we have lots of fun together, especially when I am well.
I am a jolly 13-year-old, and despite my pain and illnesses, I always have a permanent smile on my face. I don’t have much of a concept of the world, but I always repeat words and phrases, copying everything I hear. I also add my own twist to what I hear, which soon becomes everyone’s catchy words and phrases in my family, making everyone happy. My mom always says, ‘I am her happy place’. Even though my mom has been through a lot in life, losing my eldest sister to a brain tumor at 4 years old and then going through a divorce, she is always optimistic about life and is grateful for everything, especially me!
I have numerous underlying health issues, which include galactosemia [Editor’s note: a disorder that affects how the body processes a simple sugar called galactose], autism, right eye congenital ptosis [Editor’s note: a droopy eyelid], global developmental delay, chronic kidney failure, numerous food allergies, and asthma. I am continuously tube fed and suffer from chronic constipation, so I am on many medications, and my mom is my 24/7 caregiver for all my needs.
Despite doctors having no faith in dialysis as the way forward, I had to recently start undergoing it twice a week. This is a very rocky road and a massive change for my mom and me, as we don’t know if we will be home or admitted to the hospital. My mom drives me to and from the hospital for my dialysis treatment. It is about 25 minutes away from us, but when we get stuck in bumper-to-bumper traffic, it can take more than an hour to reach home. During this time, I feel exhausted, and I am always retching on the journey home.
My mom had to write a complaint letter to Patient Advice and Liaison Services (PALS), as she felt like the doctors were not paying attention to my treatment and were discriminating against me due to my special educational needs and disabilities. My mom felt like the professionals involved in my treatment were not serious about my care and were not discussing my treatment plans with her.
Following this complaint, my mom now feels the renal team is providing better quality care, which I deserve to receive. However, there still remains an issue with the transplant coordinators, as my mom feels there is no compassion or support provided by them for both myself and her.
I contracted COVID in January 2021. For me, this wasn’t a pleasant experience at all. I was admitted to my local hospital for a full month. During this time, I experienced spikes of high fever, which were very difficult to manage, with multiple cannulas inserted in multiple areas of my body. I also got a Methicillin-Resistant Staphylococcus Aureus (MRSA) infection from the hospital, which further prolonged my stay there. It was a challenging time for both my mom and me, as she contracted COVID too. My mom couldn’t rest; she was too busy nursing me, as I solely rely on her for all my needs and have high levels of anxiety and trauma from the regular insertion of needles and hospital staff. Due to the pandemic, no visitors were allowed, so it was a very difficult time for my mom to manage all alone without extended family support.
I have many unexpected hospital visits, both for my underlying health condition (CKD) and when my feeding tube comes out or when there are other issues with it.
During these times, my mom is always on standby; she always has a bag prepared for us. Despite this, we are never quite prepared at times, as we have many things to prepare. For example, I am on a special diet due to being lactose intolerant, so my mom has to pack my special food and all my medications, as some of these items are not easily available at the hospital due to being special and difficult to source.
Staying away from my own home and bed is a major deal for me, as I have attachment issues due to my autism. Therefore, my mom faces many challenges with these hospital admissions. She always tries to request a side room, trying to accommodate my autism and other challenging behavioral issues. However, this facility isn’t always available, making our stay at the hospital further problematic, especially for my mom, as she has to work extra hard trying to make me feel as comfortable as possible.
I would urge the government, policymakers, and health services to consider providing more facilities for patients with kidney failure like myself and their parents or caregivers.
My mom reached out on social media and in newspapers to share my story and look for a matching donor, but my health has deteriorated further since we put out the social media pleas. I am South Asian with blood group 0, and there aren’t enough South Asian donors in my community; sadly, this limits my chances massively. I believe that if more people came forward to offer a kidney donation, we wouldn’t have to go through such a difficult time with my treatment while facing these challenges.
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