HELP US SAVE ELAIYA’S LIFE!

It's with a heavy heart that we share the story of our beautiful 1 year old daughter, Elaiya. On 25.05.22 our world was turned upside down when Elaiya was diagnosed with an extremely rare and aggressive form of leukaemia called AML (acute myeloid leukaemia). This cancer only affects around 100 children per year and of these, only a handful are subcategorised as high-risk of relapse.

Elaiya's Leukaemia presents with a GLIS2 genetic mutation, this puts her in the high-risk category. This incredibly rare gene meant that the standard course of treatment (chemotherapy) would not cure her. Our only hope was to attempt a bone marrow transplant. The search for a compatible donor was conducted worldwide but not a single match was found.

It was a race against time to find Elaiya a donor. Her story spread far and wide with coverage from news channels, radio stations and social media. Pop-up swab clinics across the country began registering people in the thousands. The public’s response was nothing short of awe-inspiring. The floods of messages showing love and support have helped us through this nightmare more than we could put into words. As parents we are and always will be eternally grateful.

The two organisations (DKMS and Anthony Nolan) saw surges in registrations during our campaign. The doctors commended our efforts but told us that finding a match for Elaiya was “like finding a needle in a haystack”. Even with the odds against us, we overcame the impossible. We found Elaiya two matches, and a further FOUR matches for other children requiring transplants. We are immensely proud and appreciative of everyone who supported our cause.

For the first time in months, we felt on top of the world.

Before we had the chance to celebrate, we were presented with yet more bad news. The results from her latest biopsy showed that the chemo was ineffective at bringing her into remission pre-transplant. The consultants unanimously decided to use stem cells from a mis-matched umbilical cord instead. This option was far riskier, and a long list of potentially life-threatening complications had to be consented for. Elaiya prepared herself for battle once again.

Elaiya’s transplant went smoothly. Not a day went by without her blowing kisses to the nurses. Her infectious smile captured the hearts of all the staff members. She displayed the strength of a little lioness!

Fast forward two months, after countless prayers and an abundance of hope, we awaited Elaiya’s transplant results. Our worst fears came true, not only did we fail to achieve remission, but her leukaemia increased TENFOLD. In our consultant’s eight years of experience on this ward, it was her first time witnessing this.

We have now exhausted all treatment options available in the UK

Our only hope now is to travel to Houston, Texas where Elaiya will be admitted at MD Anderson Cancer Centre for several months to receive stage one of a two stage treatment plan. This is the last chance to save our daughters life.

A new drug called STRO-002 has been developed which specifically targets Elaiya’s gene mutation. It has been administered successfully in 20 children so far. If this is successful InshAllah, it will bring Elaiya into remission. We have been told the estimated costs for inpatients to receive this drug is between $600,000- $1,000,000.

Stage two of her treatment presents two options. Either explore CAR-T therapy OR re-attempt a bone marrow transplant. There is currently a CAR-T being developed specifically for Elaiya's genetic disposition (GLIS2) by the same consultant who has founded the STRO-002 drug. We are praying that it becomes available in time as its due to be release by mid next year. The cost of this treatment ranges between $500,000- $1,000,000. If this treatment is not available in time, we will have to re-attempt another bone marrow transplant. If this is the case, we will return to the UK as long as Elaiya is well enough to travel.

It is now a matter of urgency. With the rate at which Elaiya’s leukaemia is spreading, we must act as quickly as possible. Elaiya will be the first international patient to receive this drug. The consultants in Texas are working on approvals from the FDA which takes 1-2 months on average. Once we have the green light, we will be ready to travel on the next available flight. Elaiya is due to receive another round of holding chemotherapy next week to keep her leukaemia under control.

Elaiya has spent nearly 6 months in hospital, yet she tackles each day with pure gracefulness. She has kept us sane with her cheeky smiles and loving nature. Elaiya has redefined the word strength and as parents we couldn’t be more proud of our little champ.

We need your help. Even the smallest of donations will help us save Elaiya’s life. Please share this message and page. She is the heartbeat of our family, and we cannot imagine a life without her.

All the money raised will be used only for Elaiya’s medical expenses and associated costs. In the event of not using the funds, ALL funds will be used to support the life-saving work of leukaemia research foundations and/or to support other children fighting cancer. This is a pledge that we will honour in Elaiya’s name.

Thank you doesn’t seem worthy enough to express our gratitude for every single one of you rooting for our little girl. Elaiya has that fighting spirit, she will not give up and nor will we!

You can continue to follow Elaiya’s journey on Instagram @fightforelaiya