It’s with a broken heart we share the story of our beautiful baby girl Siyana who is 6 months old. This is something no parent should go through or have to write about, but we hope you can read our story understand our pain and help us save our little girl. We plan to raise money to seek treatment in America for heart surgery. If for any reason we are unable to get to America or anything changes we will donate to a chosen charity related to Siyana’s illnesses.

Here is our story - No feeling can explain the happiness of a first child we was overwhelmed with love and protection. We imagined life with a beautiful baby that loved us as much as we loved her. We got to our first 12 weeks scan and that’s when things started taking a turn for us.

But all we saw was this beautiful baby bouncy on the screen in front of us. I was at highest of happiness and in the depths of despair all in one moment. We loved our baby no matter what, she was the new reason to life. They took some bloods from me and my husband booked us in for more scans and sent us home in turmoil, what was meanto be the happiest day of our lives turned to be filled of worries and hope.

During pregnancy we was told that Siyanas heart can be fixed they have a good 95% success rate and she will go onto live a relatively normal life. We was hopeful. She decided to come early than expected but with lots of determination and fight. I gave birth to our girl and she was angelic, a perfect Snow White. She did amazingly through birth despite her antenatal diagnosis of trisomy 21 (known as Down syndrome) and a heart defect AVSD (a large hole in the middle of her heart). This was unfortunately the least of our problems.

We spent our early weeks in NICU and was waiting for Siyana to grow. It was only when we came to Birmingham children’s hospital to have surgery a new diagnosis of TAM (a form of leukaemia cancer) and PVS (narrowing of her pulmonary viens) which is very rare and with the combination we have even rarer. It quite literally gave us a death sentence. No surgery can be offered and Siyana was to be on the palliative pathway. We was devastated, to us our baby is the whole world, and everything inside it, we can’t imagine it without her.

We had conversation and we’re told things which no parent should be hearing, we was was planning our babies funeral and she was only 15 weeks old all while praying for a miracle or that they had it wrong. We agreed with the cardiology team and understood Siyana prognosis and with a broken heart and no choices we understood that and put a ACP in place with support from palliative team and waited to see our baby decline. Siyana was not for resus or escalation if her heart failed, or for any intensive care interventions.

While the doctors were waiting for Siyana to deteriorate, we watched her grow and her personality develop. She instead thrived, she grew, and she is strong, sassy and meeting milestones as best as she can. She did what they said she couldn’t, because as much as doctors know, it doesn’t factor in the will to live, or a mothers pray or God’s plan.

Siyana stayed in hospital as she needed oxygen, particularly her airvo which delivers a higher flow of oxygen. As weeks passed and went to months, we managed to get Siyana onto nasal cannula oxygen needing 0.75 for short periods and she is doing pretty well. We even got to walk around leaving our cubicle after 6months and getting into the hospital garden to enjoy some sun. That is all we wanted to be able to get our girl to feel the wind in her hair and the sun on her skin, these were little wins that felt like huge achievements.

We were hopeful as Siyana had defied odds and grew regardless of her prognosis that the surgeons may consider surgery or even palliative surgery, anything to help Siyana live longer but they refused again. We asked for second opinion but the UK seems to have no options for us. Not a single intervention or surgery nothing but palliative route and that is just not the route for us. Every child should have the chance at life and be given an opportunity that’s all we are asking for just a chance at life.

We would like to take Siyana to Boston where they can fix her heart and at least give Siyana the chance to live. She has so much to live for. She is so loved.

We need your help. Even the smallest of donations will help us save Siyana’s life. She is the beat to my heart and the apple of my eye, we cannot imagine a life without her.

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

Thankyou.