Many of you already know Elara and the miracle of her life so far. But for those who don't, I will try to introduce ourselves and our situation as best as I can.

Writing about our journey is never easy, but I will give it my best shot.

Elara was born at 25 weeks, a total of 15 weeks early due to placenta abruption.

Unfortunately, Elara passed away during birth. Thanks to the fantastic team at Singleton Hospital, Elara was revived.

Apart from extreme prematurity, Elara was diagnosed with a bleed on the brain, chronic lung disease, and lesions on her liver and skin.

Elara was given a 3-day life expectancy. Remarkably, Elara survived. Doctors convinced us Elara would be blind, deaf, and disabled. However, Elara defied the odds once again and remained at Singleton Hospital for a further 8 weeks, dependent on a ventilator and feeding tube. At 32 weeks, Elara was transferred from the ventilator to high-flow oxygen before being transferred to a hospital closer to home, Glangwili. With the fantastic support from our NHS, at 36 weeks, Elara began to take oral feeds. Her oxygen requirements continued to improve. At 40 weeks, Elara underwent laser eye surgery, which proved successful, and after the anesthetic, Elara no longer required any oxygen support. Finally, after 16 weeks in the hospital, Elara came home.

Once home, Elara soon became exhausted by the effort required to feed orally. Her feeding volume slowly decreased. Elara began to lose weight, and eventually, the NG feeding tube was reinstated to support feeding. Unfortunately, Elara became completely dependent on the tube.

Elara will be 3 this May, and even though we have had some small successes encouraging Elara to taste and chew foods, we cannot get her to swallow. We have come to the conclusion that we cannot improve or progress any further alone.

We have exhausted all avenues and advice the NHS has to offer and are now left with two options:

Surgery to fit a permanent tube into the stomach, or

Work with the private company "Notube."

"Notube" is a team of specialists and therapists with years of experience and success weaning children and adults off feeding tubes. They are based in Austria. If we can successfully raise the funds needed, Elara will undergo a 3-month program designed to wean her from the feeding tube indefinitely, improving her quality of life immeasurably and completely removing the need for surgery.

The feeding tube has been bittersweet. Without it, Elara would have never survived, but with it, she has had to be strapped down in a pram attached to a slow feeding pump for 8 hours every day. This has had a massive impact on Elara's physical, mental, emotional, and social development. Fortunately, after the first year, Elara gained a tolerance for feeding and became able to cope with larger feeds at a faster speed, so our time on the pump slowly decreased.

Finally, after 2 years, Elara now only spends two hours a day on the pump. However, these two hours are now the most heartbreaking. Elara is at that wonderful age where she wants to play, run, and explore. She has learned to hate the pram, hate the pump, and hate the whole experience.

As a mum, it is heart-wrenching to strap down your child and force them to eat. To remove them from their siblings and their play just to be force-fed. To see Elara eat with her family around the table and have a normal childhood would be the best gift our family could ever receive.

This is why we are reaching out today to ask for donations so we can receive the specialist care Elara so desperately deserves.

Thank you.

Donation Information:

7.5% of all donations to Tree of Hope in relation to this appeal will be allocated to the general charitable purposes of Tree of Hope to cover our core operating costs.

If we raise insufficient funds, or surplus funds, then the funds will be used, if appropriate, to fund support for our child’s needs in accordance with Tree of Hope’s charitable objectives. If, in those circumstances, we are unable to use all or part of the funds for the benefit of our child in accordance with Tree of Hope’s charitable objectives, then any funds that cannot be used will be transferred to be used for the general charitable purposes of Tree of Hope.

Thank you for taking the time to visit my JustGiving page.