Sickle Cell Anemia: Vanessa & Elijah’s Story

Vanessa is a mom whose love, courage and determination is hard to describe. Her story has touched the core of my heart, and it must be told. Vanessa's son Elijah has Sickle Cell Anemia - a massively underfunded condition that mostly affects Black people - for which there remains no cure. Vanessa and I met on Instagram while both going through IVF several years ago. Here is a mama who despite indescribably difficult circumstances, chose to fight not just for her family, but for ALL those struggling with this debilitating condition.

In 2017 a beautiful lady began following my IVF Instagram account. Her account was about Pilates, not IVF.  I was intrigued as to why she was following me, but I accepted her.  I liked her energy and the mystery. There was a pure vibration from her page so I let her follow.

My IVF page was very personal and dear to me. It was where I shared my journey to a cure for my son Elijah. Elijah was born in 2011 with sickle cell anemia which is a chronic and life threatening genetic blood condition; the only cure – a bone marrow transplant from a matched sibling. Treatments for this condition were limited; it affects mostly Afro Caribbeans, Indians and people from the Mediterranean. I learnt it was, and still is majorly underfunded compared to conditions that affect White people.  So we set ourselves on a mission to firstly create an HLA match for Elijah via IVF PGD with a longer term mission to set up a charity called Crescent Kids. Crescent Kids would be our way to shine a light on this condition and push for funding towards medical research for better treatment options and a cure.

I later discovered that Nikki was following me because she was also doing IVF. We began talking and supporting each other on the journey. My journey was long and complex. I had 4 miscarriages and was 5th time lucky with my beautiful son Eden. The IVF/PGD meant Eden was born without Sickle Cell – the amazing wonders of modern science 🙂

Nikki fell pregnant before me which I found beautiful and inspiring! I’ll never forget one of her dance videos; shaking what her mama gave her  when she was in the 3rd trimester. So entertaining !! I always felt a special bond with Nikki. I loved her light; she continues to inspire me till this day 🙂

Anyway, after Eden arrived into our lives I knew it was time to begin the journey with my charity – Crescent Kids. Elijah has been unwell for 6 yrs with the majority of that time spent in the paediatric ward in hospital. Admissions were awful times; we watched our son connected to IV Morphine, IV Fluids and IV antibiotics time and time again – the management protocol for this debilitating pain. This pain would render him to a bed for days on end. Once the pain left, he would slowly learn how to walk and move around again. It’s heartbreaking and relentless.

While I was pregnant we were in and out of hospital until deep into my third trimester. We then spent most of Eden’s first year in hospital. During one of our hospital admissions Elijah asked me if he was dying; I asked why and he answered ‘ because it hurts so bad’. My heart broke into a million pieces.

It is no secret that Elijah’s condition is vastly underfunded. Sickle cell anemia affects a minority. Crucial funding doesn’t come our way. I knew I would have to do something and as soon we achieved some stability with Elijah’s health and (Eden was 9 months old) I drove Crescent Kids forward. I launched a Covid -19 campaign to provide care packs for children and families with Sickle Cell. The care packs include face masks, gloves, hand sanitisers and key natural supplements (like elderberry syrup) to boost immunity. We are generating interest and parents globally are coming forward for care packs and to share experiences.

Our wider aim is funding for medical research, we are excited & hopeful for the future!

More information can be found on our web site www.crescentkids.org and our instagram page @crescentkids

Finally, big thank you to Nikki and Andrea for supporting Crescent Kids with the June sales of your Batch Nutrition Recipe E-Book!

 

Vanessa you are a true inspiration and I am honoured and humbled to be sharing your story. Thank you for ALL that you do. I truly hope that we can put an end to the racial disparity in our health care funding. Families with Sickle Cell Anemia and Thalassemia deserve better. We are so honoured to support your Crescent Kids charity (https://www.crescentkids.org/) through the sales of our Batch Nutrition Recipe Book through the month June, and will continue to support you in any way we can!

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