I don’t know if I’d have got through the DLA tribunal without Sangeeta’s support

Ana was diagnosed via the heel prick test at three weeks old. It was a shock; a complete whirlwind and we just went crashing into this whole new CF world which we didn’t know anything about. 

You automatically fear the worst – and all I could think about was ‘how long is she going to live?’ We were trying to make sure this tiny person was okay, but feeling so scared ourselves about what the future might hold. 

Every day with CF is so intense. I think that’s what people don’t always understand; yes you might look okay on the outside, but they don’t realise what it takes every day: the care, the medication, the physio. It’s constant. Even explaining to friends and family why we can’t always accept the party invitation or go to soft play can be difficult. We have to say no sometimes because it’s not worth the risk. I think there’s still lots of awareness needed to educate people on the complexities of CF.  

On top of all that, there’s the financial implications of a CF diagnosis. My husband is self-employed and it has been really tough to juggle work with all the hospital appointments and care that’s needed.  

I got in touch with Cystic Fibrosis Trust for advice about appealing a disability living allowance (DLA) decision. The whole process had been long, stressful and frustrating and the decision just wasn't fully recognising Ana's needs. I went in circles blaming myself thinking I hadn't filled the forms out well enough or given enough detail on Ana's care in the daily diary you have to fill out.  

I spoke to Sangeeta, who is the Welfare and Rights Adviser at the Trust, and she was so brilliant. The main thing she gave me was validation. I felt like everything I provided from the start was ignored. Sangeeta gave me the validation that I’d actually done everything I could have done and their decision was wrong. Sangeeta supported me through the tribunal process. I was feeling really anxious about the tribunal, but she was always there and encouraged me to fight the decision.  

We found out the week after the tribunal that we’d won and honestly the weight lifted off my shoulders was immense. I don’t know if I’d have got through it without Sangeeta – I’m so grateful for the support. There are so many others in the CF community who are going through the same thing, so the service the Trust provides is really important.  

My hope for Ana is that she can live a full and healthy life, have fun, and not let any obstacles stop her. She’s an amazing little girl, who takes everything in her stride. We’re really proud of her.  

For advice regarding your current benefits, speak with your CF social worker or get in touch with our welfare team through the Helpline.

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