As you may be aware, Dottie is very complex medically. She has chromosome 4 deletion, 2 holes in her heart , hypertension in her lungs , areas of brain damage that will cause seizures, GERD, cleft lip and palate, low muscle tone, glue ear that requires a hearing band and unsafe swallow meaning she is on a 22 hour feed pump.

We are really devastated to announce this update with Dottie.

As you know we moved to Leicester Royal Infirmary in order to get a plan together to attempt to fix her heart.

Unfortunately we heard the words nobody wants to hear;

" There is nothing we can do, medically or surgically."

She has pulmonary vein stenosis, which basically means that the veins between the lungs and the heart in the left side of her heart are greatly narrowed, causing high pressure in her heart. ( called pulmonary hypertension).

This is a terminal diagnosis.

This has broken us, but we are attempting to keep strong for Dottie.

We have asked for a second opinion and this was requested from Great Ormond Street and awaiting a response.

If this isnt positive we will have to look towards America and try and fund her to have a second opinion to get some medication and/or operation over there in Boston Massachusetts as they can and do fix this.

She has a compromised airway and is awaiting a specialist scope down her throat on Thursday to assess her airway, and potentially give her a tracheostomy if needed, but her heart may stop.

We have been visited by the palliative care Consultant and Nurse to discuss options for Dottie going forward so that she can see out her days in relative comfort at another hospital closer to home , a hospice or at home, which ever helps her pass the nicest.

We do not know how long we have left with her, and nor does anybody else, typically the condition is progressive and they don't live past toddler age, we hope this isn't true.

We need to get her home and spend time as a family to give her the best short life we can.