Baby Lillarnia

PLEASE READ!!

Our beautiful baby girl Lillarnia was born on the 9th of May 2023 at 25 weeks +4 days so is a micro preemie baby. Lilliarnia is 14 months old now but since the moment she was brought into this world she has had to fight! She had a bleed on the brain at birth and we were told she may never be able to walk and may have learning difficulties. Baby Lillarnia spent the first 4 and a half months of her life in the NICU at Jessops and a lot of that time was on a ventilator.

She was finally discharged from hospital on the 13th September 2023, although this almost didn’t happen due to her heart stopping and the nurses needing to preform cpr on her.

Lillarnia has been diagnosed with severe chronic lung disease, pulmonary hypertension and metabolic bone disease.

She spent two beautiful months at home before being rushed into the Sheffield children’s hospital in November 2023 where she was out onto the ventilator. She was well enough to come home on the 12th December 2023 but had to be readmitted on the 16th December 2023 due to her oxygen saturating very low.

Lillarnia had to be admitted to Rotherham hospital, then transferred to Leeds to then be transferred to Sheffield children’s hospital where she spent her first Christmas.

Since Christmas Lillarnia has spent 8 days at home in February, however she was rushed back in and still remains an impatient now. She has spent 8 months in the children’s hospital with her mum by her side every day.

Lillarnia has had some genetics blood test done and the results revealed that she has a very serious heart condition called hypetrophic obstructive cardiomyopathy (HCM). It is a mostly inherited heart disease where the heart muscle wall becomes thickened.

A few weeks ago Lillarnia was ready to be discharged and preparing to go home when her little body went into pulmonary hypertension crisis. And again she was put on a ventilator.

As a family we have been seen by a specialist cardiologist who specialises in Lillarnias condition. We was told her heart has deteriorated so bad over just 3 weeks that there isn’t much they can do for her and she doesn’t have long left. They can’t give a time frame but it is progressively getting worse. They have only ever seen this in adults and never a baby her age so the option of surgery just isn’t viable.

We dont know how long we have left with her. We just pray as a family we can get her home and make whatever time we do have the most special and magical for her.

She has been through so much in such a short space of time.

Please donate whatever you can to make this time as special as possible. We would love to make some precious memories with her. Also any donations will be used to help her mum with the financial cost of everything.