Ariana is a two year old toddler from Salford who suffers with chronic lung disease and food aversion of anything in her mouth due to her being intubated for 7 months. We want her to taste all the good food this world provides us!
Ariana was born twin two on the 2nd October 2017, a tiny but lovely young lady. Both of our twins were taken to HDU at the NeoNatal at Manchester St Mary’s Hospital. After 7 days Twin 1 Inara was discharged absolutely fine to come home with us but Ariana had to stay as she did not gain much weight. She was still able to bottle feed completely and had an NG tube.
At day 11 of life her breading became abnormal and she had to be put on oxygen. That’s when it all started. After a few days Ariana was in NICU and was put on a ventilator for the next 6 months of her life. To watch such a tiny sweet young baby in a ventilator was tough. Ariana was diagnosed with pulmonary hypertension, possible Interstitial lung disease and PDA.
The doctors decided that she needed to have a PDA ligation. She was moved from St Mary’s in Manchester to Alder Hay Hospital in Liverpool for this operation. Upon arrival she had pulmonary bleeding and needed to be kept in a special ventilator to stabilise her during the first week. The surgeons then started to assess whether she could undertake the operation. Thankfully on the 26th of February she had open heart surgery which was successful.
Ariana returned to Manchester PICU at the Royal Manchester Children’s Hospital. After a month, Ariana came off the ventilator and gradually moved into just receiving oxygen at night. She was discharged from the hospital in May 2018 and we had the joy to have Ariana at home reunited with her twin sister.
Ariana has several teams looking after her and they have all been amazing. Recently, in March 2019 she took her first steps much to our great joy. However, she is still not eating anything through the mouth or speaking. Ariana has developed a tube dependency, resulting in food refusal, oral aversion as well as retching. To help tube-fed children who are unable to travel long distances, NoTube has developed a standardized telemedical tube weaning program. This support in feeding and eating techniques and development of motor skills will greatly enhance Arina’s quality of life.
We ask for your support so we can help Ariana get the treatment she needs to become more independent.