Sickle cell disorder isn’t something anyone can prepare for. Typically the whole family will at one point or another feel the harsh effects of sickle cell.
But what does it feel like to be a mum to a child living with sickle cell? I’m curious to know.
If you are too, keep reading.
I connected with a mum of a warrior via Instagram. Honestly, I think she’s really doing a great job. Not only is she raising a strong warrior but also she runs a sickle cell charity.
In this interview I had with her, she describes what it feels like caring for a child with sickle cell and also running a UK-registered charitable organization working towards the betterment of the sickle cell community.
Read the interview below
Kindly introduce yourself ma
Hi, I’m Funmi Vanessa Ullam. Mum of 2 awesome boys, my eldest (9) was diagnosed with Sickle Cell type SS when he was 2 weeks old.
I work for a global technology company. I am also the founder of a Sickle Cell Research charity called Crescent Kids.
Were you aware of your genotype and your partner’s before marriage?
No. I became aware that I was a carrier only when I was 16 weeks pregnant ( despite previous tests).
What’s it like caring for a child with sickle cell?
It’s a roller coaster. Life is unpredictable, the condition has consumed us over the last 9 years. Life isn’t normal (especially when the pain crises are consistent). I have found that my heart is heavy. When he is in pain I’m not myself.
There has been an impact on every single area of life and it can be difficult to explain to people. There are lots of sleepless nights, school absences, unable to attend events – it can be very isolating. Navigating life, work, relationships in the midst of turmoil.
My faith in God has sustained me all of these years. I truly believe that what he says is more important than what you see. Hebrews 11:1 is my mantra.
Crescent Kids gives us hope for the future and makes the present more bearable because we are believing in a better future.
How often is his crisis and is there any special treatment you’ve been into?
The crisis used to be very bad. Painful level 10 + crisis at least once every two months. These crises used to land us in hospitals on PCA units pumping morphine to control the pain.
During one admission he asked if he were going to die, because it hurt so much. My heart broke into a million pieces that day. In fact, I still feel heartbroken.
Since a shift in nutrition, use of supplements, and other holistic practices we have reduced hospital admissions, and also his pain crisis is now more of a low-level pain that we mainly control at home. I have found that things are better with targeted focus however the pain crisis still occurs, they just don’t escalate to the levels they used to.
Your organization has been doing a great job for the community, how did it all start?
During our journey it has become crystal clear there is an extreme lack of awareness, funding, and research into this condition. So I set up a charity to fund research into Sickle Cell.
We launched during the pandemic. I suddenly realized that it was a scary time as a parent of a child with a chronic condition; I wanted to show support to other parents like me so I did crowdfunding to raise money to deliver Crescent Kids Covid Wellness Packs.
These were packs containing Elderberry syrup, Vitamin D, essential oils, hand sanitizer, masks, and affirmation cards. Crescent Kids is a UK-registered charity with the aim of funding critical research and providing support for children and families impacted by Sickle Cell.
We built community and have been working ever since to provide valuable services such as Hospital Kit Bags, Winter Wellness Boxes, KIds Wellness Bootcamps, Warrior Wellness Bootcamps
We are currently leading a digital health initiative to create an app for the community and we recently partnered with an amazing charity called ASNA to launch a Sickle Cell Helpline.
How do you handle being a mom of two, career woman and hospital visits?
By the Grace of God!
Honestly, it’s tough and often overwhelming especially running Crescent KIds as well.
I think working in Tech helps because we have always had the ability to work from any location; this means that I have been able to carry on working through the many hospital visits and admissions. My motivation is the hope for change and a better future for my son and other kids with sickle cell.
Crescent kids is about to launch an app, tell us more about it.
Sure! It’s an app for all Sickle Cell Warriors, parents, and carers. The app is there to empower, engage and educate.
Users will have the ability to log the number of pain crisis, the severity of pain. pain location, pain frequency. Pain has a direct impact on a number of areas (mood, concentration at school, and mental health). The aim is to capture data to show the reality of living with sickle cell.
For the parents, the app will provide the ability to log medications, water and hydration.
For the kids they will be set targets and allocated rewards for hitting hydration and nutrition goals.
Data collection in healthcare allows health systems to create holistic views, personalize treatments, advance treatment methods, improve communication between doctors and patients, and enhance health outcomes.
Is it a free app?
Will the app be available to every warrior no matter where they are on the planet?
What’s your advice to parents with children living with sickle cell?
Join a community of like-minded parents, try and find inspiration where you can, make time for you – you can’t pour from an empty cup. Download the Crescent Kids app!
What’s your advice to people living with sickle cell?
I would hope that every person living with this disorder has a trusted person to care and advocate for them. This is so important.
The Eli App and sickle cell
So, I decided to work with crescent kids on this app because this is an app we’ve all been waiting for in the sickle cell community. The Eli App is a modern, interactive platform to keep track of key data and empower the warrior and caregiver.
It promises to be very helpful.
The app will help warriors and caregivers,
- Track crucial vitals
Whether you are a warrior or a parent, you will be able to track your or your child’s crucial vitals like water intake.
- Review daily health goals
You can set goals such as the number of steps you want to take daily and also review them.
- Measure frequency of pain episodes
Do you know how often you have a pain episode? You can measure that in this app and use that information to detect when something is not right.
- Identify body parts prone to frequent affliction
You can also record which body part is prone to frequent pain.
- Access sickle cell communities
We noticed it’s sometimes difficult to access with others in the community and sickle cell organizations. The Eli app hopes to make organizations accessible to warriors in their communities.
Now, the good news
We would like to invite you to be a part of this innovation and join the BETA testers of the app. Click here to fill the form.
Trust me, it takes less than a minute to fill that form.
Also, follow Crescent kids on Instagram for more updates.