Meet Arya, who is 16 months old.
Written by her mother, Sabeena.
Arya is the most fun, loving, and determined little girl we know – I might be a little biased there.
She was born in Dubai as we were working out there at the time. We relocated back to the UK in July 2019. The past year hasn’t been easy but we have seen Arya thrive and are so proud of her.
She didn’t have an easy start to life, those first few months were hard. From not being able to drink her milk properly, working hard to breathe, not being able to put weight on, and going through heart failure. Being in the hospital for over a month then back and forth after that, we knew hospital admissions and appointments were going to be the norm.
‘Mum guilt’ kicked in for the other two at home. Alhamdulilah, she fought and pulled through like a trooper. She had three holes in her heart, two closed up and the last one, that was bigger than the others is closing up by itself. She might need surgery later, but for now, she will be monitored every three months and is off her medicines.
Over time everything got easier, she got older and stronger. We learned as we went through each hospital admission, each appointment, viral infection, constant vomiting, pulling tubes out. There isn’t anything we can’t and won’t do for her. I’ve even been trained to pass her NG tube. At the start, the doctor said to me he thought it was a good idea that one of us got trained to do it, and back then I thought it would only be a short-term solution, so we wouldn’t need to be trained. A year on and she still has it, which is fine. Nevertheless, if you have passed a tube down a baby’s nose you will know how traumatic it is.
Arya has definitely come out of her shell over the past few months. Lockdown has helped us all so much. It has given us the time to focus on her needs and physio that will help with her progress.
Arya is a professional at making the funniest facial expressions, her naughty look is infamous at home. Everyone will get this at least once if not twice a day. She loves to wave and smiles at everyone who she sees, that smile melts anyone’s heart. She loves clapping her hands especially when she has done something or when we praise her. She even understands it when we ask her to clap her hands in our mother tongue, Urdu. High five is a must with everyone. She loves blowing raspberries and pretends to cough all the time. She loves Mickey Mouse, as soon as she hears the theme song she starts to dance and move side to side. Even if she is asleep, she will wake up to the sound of the theme song. She knows exactly what she wants and is the boss in our house. When we pretend to ignore her, she will shout to get our attention. She loves playing with her older brother and sister, whether it is breaking the cup tower they build her, hide and seek, reading a book, or her favourite, peek-a-boo. All you have to say is “Where is Arya?” she will begin to lift her top up and pretend to hide.
The bond between all 3 of them is something I always wished my children would have. They love her so much and so does Arya. The excitement on Arya’s face is priceless when she sees them once they are back from school. All they see is their sister.
My daughter has asked me a few times, “When will Arya start sitting, crawling, and walking?”. This is because she sees her cousin at a similar age doing all that. I tell her, “It might take Arya longer to get there but she will do all that but in her own time.” Now I have heard her repeat this to her brother and other people. Children will only repeat and say what they see and hear.
She has the most loving and caring personality. It may seem like she is always happy and this is something that is perceived of children with Down’s syndrome. However, let me tell you, Arya has meltdowns when she is tired, is grumpy and quiet when she isn’t well or is teething. She has different emotions just like everyone else.
She is a blessing to us and our family, she has taught us patience, hope, and how to be strong. I have started my own business because of Arya called Luvabyuk. I make personalised babies and children wear. The first thing I made was a hashtag t-shirt that says Arya #somuchworth. I have then gone and created a few more designs and t-shirts for Down Syndrome Awareness Month. Giving 50% from each t-shirt to charity. I hope to do more in the future and give to more charities. One day I hope to be able to make ‘Welcome to the World Baskets’ free for new parents who received a diagnosis that their baby might have Down’s syndrome, or if they have recently had a baby with Down’s syndrome.
Arya has the potential to do anything she wants and with that amazing personality, she will be going places. She will show the world that having an extra chromosome doesn’t mean it’s a problem or that her life is worth any less. She has fought for her life from the split second of fertilisation and beaten all the odds. She is simply that extra special, we truly are blessed and the #luckyfew ❤.