Shakia Cavagan, four, from Pelton has an incredibly rare disease called DiGeorge Syndrome. This particular disease is uncommon in this country and often found in third world countries such as Africa. DiGeorge Syndrome is where you have point five less of a chromosome, so 36.5 rather than the 37 found in healthy beings. Similar to Down Syndrome (where the patient has a full chromosome missing) this disease has left Shakia with many problems such as heart problems, a cleft palate, hypermobility, hearing difficulties and many more. This however has not slowed her down in any way and her mother describes her and a "happy" and "energetic" little girl.
Robyn Cavagan, Shakia's mother found out at her 12-week scan that things were going wrong with the pregnancy.
She said: "We went to hospital and they found fluid on her neck and they have me some tablets to take and when we went back the next week they found the problems with her heart. At first they thought it was Trilogy Ortholo but eventually around the November time they found a little duct that they needed which completely changed the diagnoses to DiGeorge Syndrome.
When she was born, she was transferred straight to the Freeman and I had to stay at the RVI where they stabilised her and hooked her up to the heart monitors and she stayed there until she was 10 days old where she had open heart surgery on Christmas day 2013. And then I went to the freeman the next day so I had eight days without her."
Shakia was unable to drink her baby milk orally and she had to be fed through a tube which was positioned in her nose and went into her stomach. Shakia would always pull this out however, and it would cause her a lot of trauma to keep putting it back in. This is why the doctors decided to replace the tube with a peg in her stomach.
Due to this serious condition, Shakia has had to go through seven operations, two of which have been open heart surgery, with a possible two others in years to come. Here is a timeline of these operations.
The treatment for DiGeorge syndrome is endless. Robyn is responsible for looking after her and giving her her medicine. She said: "It could have been worse if I didn't have my mam and dad. Family was a big help. Apart from the ones who tried to convince me to get rid of her when they found out she had problems. The hospital pressured me to get rid of her as well because DiGeorge Syndrome is connected to down syndrome so before they new it was DiGeorge syndrome they said it was an option to abort."
"She'll need another heart operation and possibly more grommets added who knows what the future will bring."
She said: "She wasn't really on anything until she had surgery and then she was on a whole cocktail of things. It was all a blur. When you’re sat in intensive care all day the days blur into one. I know that when she came back after her heart op she was on methadone.
They thought Shakia would not be able to walk but at 18 months she took her first steps.
Sandra Lennon, 67, Shakia's great nana said: "this girl has been through a lot over the past four years but it never seems to be a bother to her. She has bounced right back from every heart operation and looking at her, you wouldn’t even know she is ill. She is always up to something and she never stops eating. She must be making up for when she couldn’t eat when she was younger."
Now, Shakia is four years old and is as healthy as you would expect her to be. Robyn has another daughter who is three-years-old, called Katie, adores Shakia.
Emma Cavagan, 19, Shakia's auntie said: "Katie and Kia are always fighting just like normal sisters. Katie doesn’t treat her any differently in fact, I don’t think Katie notices there is anything wrong because she was born after. They are so funny together Kia has never let her illness get her down she is always smiling."
Robyn describes Shakia as a "hyper and happy" little girl. She is unable to talk however, with help from speech therapists, doctors think she will be able to talk one day. She is unable to walk far because of her hypermobility so the family are looking into getting her a wheel chair. Unfortunately, she can't go to mainstream school so she’s going to a school in Stanley in September called Croft.
Emma said: “it is a shame that she can’t go to a normal school like her sister but it means she will get more help and she might be able to go to a mainstream secondary school.”
Shakia still has a long battle ahead of her however, the family are always planning days out together and they know that one day this struggle will be a memory to look back on.
