Livining Everyday As Thou Its The Last

Hi, our daughter was also diagnosed with Molybdenum Cofactor Deficiency, to be honest not sure which type.

She was born and fed normally but in 24hrs after the birth everything changed, she was having continuous sezuires and was transferred to special care, she stopped taking her milk too.

The drs at the hospital werent to sure of what they were dealing with so she was trasferred to Great Ormand Street, where she went through all the tests possible and was eventually diagnosed with Molybdenum Cofactor Deficiency.

We were also taken that 'Room' the consultant started going through a list of what is wrong with our little girl telling us what she may or may not do there were loads more may nots.

The consultant told us that she was at the servre end of the spectrum and would not survive to her first birthday. Our little baby is now a 6 year old young lady. Yes she can not walk, eat food, drink fluids, been through numerous operations and illnesses but she is a delight and we are truly blessed. That 'Day' will come and we wait to embrace it as we have had precious moments that we thought we were never entitled too.

Shes taught us to appreciate everything and that lifes to short to worry or regret, how ever long we have with our children for whatever reasons we love them unconditionally and know that we have done the best of the best we could.
An Ep User An EP User
Jan 18, 2013