Being undiagnosed and becoming a Parent Rep

I’m Sara and I live in Leeds with my husband Dave and our two swans, Aidan who is six and Rhiannon who is 11. I’m also a swan myself.

Aidan is the youngest and is more complex and that’s how we found out about SWAN UK. I was on a feeding tube awareness page when SWAN UK popped up on the screen and I thought ‘oh my god, that’s us’. We’ve been members for about four years now and since finding SWAN UK I no longer feel alone.

I am a qualified rugby league coach for the Rugby Football League and used to volunteer for them before as well as the Church Lads & Church Girls Brigade before I got ill. I’ve also been a moderator for another organisation’s message board where I helped to support other families using my own experience, which is what I want to do again with SWAN UK. I decided I’d like to become a Parent Rep just before Christmas last year. I’d considered it for a while as I’d arranged a few coffee mornings for SWAN UK members in West Yorkshire and I thought it seemed to be next logical step.

I want to give support back to others while things are stable for our family, especially for new members who are feeling alone like we did all those years ago.

I have good friends who have supported us a lot but they don’t understand the pressures we face and how things can change in an instance; we might be having a birthday party one minute and next thing you know we’re in A&E not knowing what’s happened. SWAN UK always offers support to us when we needed it.

Since finding SWAN UK I’ve embraced the lack of diagnosis and accepted it a bit more. Some days we are banging our heads against a brick wall so it’s good to meet other families who understand; other members get the struggles and frustrations we have and we can let off steam to one another.

Aidan has had recurring chest infections since birth, though he’s been infection clear for a few months now. He has issues with swallowing has was fully tube-fed until February. He’s had immunoglobulin therapy for suspected immune system problems as he picks up viruses very quickly. He’s had a trial of regular antibiotics and now he’s on a break to see if he can cope over the winter. Rhiannon has had croup, issues with her ears and has had grommets four times and her adenoids removed. Both Aidan and Rhiannon have hypermobility syndrome and gastric issues. There are questions over whether they have Ehlers-Danlos syndromes, which I have myself. Aidan had a basic microarray test (a genetic test) 18 months ago which came back negative we’re hoping to get onto the 100,000 Genomes Project so that we can go a bit deeper and find out more. It’s not necessarily about having a label but knowing what we are dealing with so we can get a better management plan and when we go to hospitals we will be able to say ‘ we have ‘this’.

A diagnosis for us is about getting the support.

Aidan and I came close to meeting the criteria for the 100,000 Genomes Project. We are on the list for when the criteria expands so I have to keep ringing to see if there are any updates. I’d also like to get involved in the public patient involvement side of the project as it’s still quite new in Leeds and it would be good know if the criteria expands so that I can inform local families.

Having children who are undiagnosed means we see a whole list of professionals and have lots of hospital appointments. No one knows who should take the leads with kids – is it rheumatology, respiratory (to name a few)?

This leaves us in limbo as no one knows what to do. It also puts pressure on us as all we want to be is a normal family and the kids have had to miss out on things because of hospital appointments and admissions. We just want to be able to manage things better for them. When you’re undiagnosed you don’t have a box to tick so you feel alone and can mean that you can’t even go to some special needs support groups because you don’t fit. I am looking forward to talking to professionals once I’ve been in the role for longer – sometimes they can be dismissive and I want to make them realise that just because they can’t find anything, it doesn’t mean nothing is there. We get some professionals who are prepared to listen and some who aren’t, and some struggle to get their heads around the fact that they don’t know what to do with Aidan.

Going along to SWAN UK events helps the kids especially Rhiannon, as she can see that she is not the only sibling who has to deal with hospital admissions. It’s good to meet other families locally too and know that we’re not the only ones. There is a good group of SWAN UK families in Yorkshire and I’ve made friends who have helped in good and bad times. I’ve had midnight coffees and a moan with other parents when we’re both stuck in hospital. Come and join us and let’s expand out SWAN UK family!

I feel mixed about the future. We just deal with what’s in front of us and live day to day but also plan things and don’t turn down things. We just get on with it and try not to worry about going forwards. There’s no point getting stressed as we can’t change what’s there.

Email Sara: [email protected]

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