Stephanie’s Story

This is Stephanie. From birth, Stephanie was a slow weight gainer. We didn’t notice anything until she was about 2 months old, were we started to see her weight gain dropping. It was around this time that she was diagnosed with ‘failure to thrive’. 

After about 6 to 8 weeks of no change, Stephanie came down with a virus which caused her to be admitted to our local specialist hospital. At the time, they had just reopened their winter ward for chest infections and we thought it was nothing more than this. 10 days and numerous tests including a CT scan, it was confirmed Stephanie had an ‘Interstitial lung disease’. Luckily for us it has, so far (at the time of writing 15 months on) her lung disease has not been severe enough to need a biopsy so we have a working diagnosis of ‘NEHI’, which is only ‘probable’. 

The uncertainty about Stephanie’s diagnosis is worrying as we never know if she is going to deteriorate or have the diagnosis changed, etc, but we feel lucky to so far be classed as ‘mild’ ILD.  Stephanie is on permanent o2 which is a struggle. Also, she is now a permanent antibiotic due to her falling ill too often to remain thriving. Fortunately, Stephanie knows no difference and gets on with life. Great!  We would love her to come off the o2 at least in the day so she can play and run with other kids without me needing to be 2 steps behind her carrying the oxygen bottle.  In general, illness aside, Stephanie is a funny, happy, little imp who is in to everything and never stops smiling. 

Stephanie’s Parents