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Brave like a lion: Oscar

Last Reviewed 1/04/2019

By Swan UK Member, Tanya Lee

This is my little boy Oscar. He is three years of age. It’s just me and Oscar at home.

He is a very funny little boy and has an amazing caring side that not many people get to see. He can make me laugh a hundred times a day!

I quickly realised when he was around nine months old that he wasn’t like my friends’ children, he was still very silent, never made babbling sounds, wasn’t interested in toys as such. In fact he spent more time as a baby crying than anything else, no matter what I tried. The GP used to pass it off as a touch of reflux.

He was always being admitted to the local children’s ward at hospital for breathing problems, unexplained weight loss and faltering growth.

At the age of nine months old he had his first operation on his bowel to relieve his constipation issues. He didn’t walk until a year and a half, but again was passed off as being hypermobile.

By the age of two he was noticeably smaller than children his age. He started nursery  still not saying a single word. By two and a half he was finally learning sign language  which relieved some of his frustration and gave us a great way to communicate. Finally, now he is talking in sentences, and, although he isn’t clear, I am able to figure out his needs much more easily.

Oscar has since become quite challenging; He has a lot of built-up anger which is usually aimed at me. He has absolutely no sense of danger and will run off at any given chance. He loves to spin around in circles, all day every day! Oscar also lines up his toy cars or his new love of hatchimal toys!

Oscar still becomes poorly very quickly and spends lots of time at the hospital with infections, suffering febrile convulsions. There have been times I really thought I was losing him; just in June last year he collapsed and ended up in paediatric resus. That was easily the scariest time of my life. He  has also had more operations and horrific reactions to anaesthetic. Just last October he had his tonsils removed and spent several hours longer than anticipated in recovery with worrying sats results, but true to form, Oscar bounces back just as quick as he goes down.

He is brave like a lion because he never lets anything stop him trying to do what other children are doing.

His hypermobility causes a lot of pain each day and some days he finds walking a big challenge, but he is determined to carry on.

He has so much courage going to hospital for regular needles and tests. He has a smile on his face for the kind nurses and is often described as a little flirt! He takes so much medication every day to help him get by, and although there are days he doesn’t like taking them all, he does because he realises now they are to make him better like the other boys and girls.

He is my inspiration.

Oscar is learning to count and can so far get to 14 without any assistance! He loves counting and will count his cars as he lines them up, or count cars as they drive past him. He has many different medical professionals in his life, some he enjoys going to, others not so much. He is facing more operations in the near future which scares me way more than him.

He has started to ask why his body is broken which is so upsetting to hear.

The older he gets the more aware he’s getting that he isn’t like other children, but it’s also bringing lots more worrying symptoms.

Every day my son makes me proud, whether it’s learning a new word, or speaking just that bit clearer, or learning new skills like how to jump, which is something I never thought he would do!

His future becomes more uncertain as he grows.

He should be starting school in September, but currently he is still not potty trained, and is unable to dress or undress himself. He sleeps for around three to four hours a night! Oscar has become so fussy with food, and panics when out in busy places. He doesn’t like loud noises; he may only be three years old but he has power in him when he has meltdowns. The febrile convulsions happen quite frequently when he gets even so much as a cold now. The worry of more operations fills me with dread after the scary reactions in the past and nearly losing him.

Every day he is here is a blessing because the next day could be a bad day and if he ends up needing an ambulance again, no one knows if this will cut his life short or not. No one knows if he will live to see the teenage years, or even into adulthood and manage to get a job.

Being part of SWAN UK makes me realise I’m not alone in my worries. There is always a friendly face online to chat with day and night; someone to reach out and gain reassurance, or give the best advice. They aren’t just strangers on a screen, they become lifelong friends.

Having an undiagnosed child has shown me how strong of a person I am. I no longer settle for ‘possible’, I push for answers, If I don’t agree with someone or don’t like the care he is receiving I now open up and speak out on his behalf. I used to hide away and not tell others of the daily struggles or the health scares but now I’m happy to open up, raise awareness and show the world that yes my child isn’t like many others but he is an amazing, strong, brave little boy and I wouldn’t change him for the world. It’s the world that needs to change and become more accepting to differences.

Since my son has been undiagnosed I have suffered with awful anxiety. Every new appointment makes me feel physically sick and I get nervous going out in public because I don’t know how he, or the public will react. I find it difficult to make plans in advance because I never know when he will end up back in hospital.

Having a diagnosis would mean so much to us. We would be able to get the correct help and support medically, be able to research what his future will be like, if he will be able to grow into adulthood, or start a family of his own. One day, I would love to be able to write on medical forms he has ‘XYZ wrong’ instead of ‘undiagnosed’ and having to spend the next five to 10 minutes explaining how this affects him and getting the same responses.

How do they not have an answer?

WOULD YOU LIKE TO SHARE YOUR STORY AND HELP RAISE AWARENESS OF UNDIAGNOSED GENETIC CONDITIONS?

EMAIL: [email protected].

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