Leia’s remarkable journey: from unknown diagnosis to specialist care

It’s a beautiful sunny day, the birds are singing and you’re at the park, playing and exploring as a family. But sadly, for Leia, due to her illness and many frequent hospital admissions she has sometimes missed out on doing the things she enjoys most, like being in nature and playing in the sunshine with friends.

Shortly after Leia was born in 2019, first-time parents, Katie and Tom discovered Leia had a rare type of Mitochondrial Disease. It’s so rare, the gene mutation that causes this disease was only discovered in 2016 and as a result, Leia is seriously poorly.

Image of Leia smiling

For Katie and Tom, living with Leia’s additional needs has been challenging. Leia’s needs are complex, resulting in the new parents quickly adopting the roles of full-time carers. Doing so often led to sleepless nights, as their whole world revolved around Leia and her complex needs. But thanks to our Children’s Complex Care team the load is much lighter, so Katie and Tom can focus on being Leia’s parents again!   

A tough diagnosis

During pregnancy, Katie sensed something wasn’t right. A scan at 34 weeks, confirmed her fears and showed she had no amniotic fluid left. This discovery meant Leia had to be delivered prematurely.

Katie and Tom were instantly shocked by her small size and worried about her constant vomiting. Despite her seemingly normal breathing, Leia struggled with feeding and the doctor diagnosed her with hearing loss. This was the beginning of a long and emotional journey for the family, filled with many uncertainties and challenges.

When Leia was just eight weeks old, an MRI scan revealed severe brain damage. Her neurologist delivered the results to her parents along with the heart-breaking news that Leia might not reach her first birthday. Katie and Tom struggled to accept this reality, and it took them a while to come to terms with the possibility of losing Leia.

In the following months, hospital visits were part of daily life for the family until Leia reached seven months old, when she was officially diagnosed with a rare type of Mitochondrial Disease.

Managing complex needs

As time went on, Leia’s needs became more complex. She started having seizures, with some of her worst ones requiring intubation for severe respiratory problems that needed emergency treatment. After receiving a kidney transplant from her dad, Leia now relies on lifelong immunosuppressant medication. This causes a weakened immune system, making her more susceptible to infections. Because of this, she needs consistent monitoring to help keep her new kidney healthy.

This medication also negatively affects Leia’s bone marrow. This is vital in transporting nutrients and oxygen around the body, so often leaves her feeling fatigued. Bone marrow plays a key role in your immune system and since Leia also has Neutropenia (an abnormally low white blood cell count) this is particularly problematic. It means that minor illnesses, like a common cold, can lead to hospitalisation.

This is on top of frequent vomiting episodes that displace her feeding tube, which can make getting the correct nutrition and hydration into Leia difficult for her family.

These complex needs are extremely difficult for any family to manage, but surviving on just four hours sleep a night, Katie and Tom knew they needed specialist care and support for both Leia and themselves. Leia’s mum, Katie, told us, “When Leia vomits during the night, we need to be awake to record the fluid she’s losing. Sometimes we’d be awake all night and day. It was so difficult”.

Three images of Leia and her family.

Developing a care plan

Eventually, Leia and her family were referred to the Children’s Complex Care team by their local council. In October 2022, our Clinical Lead, Valaine Wilson, met the family and worked with them to develop a specialist care plan based on her needs, including ways we could empower Leia and her family to do the things they love most!

“When we met with Valaine, we were really reassured. She really listened and understood our situation. We knew it would be a good thing for Leia, and for us in the long run”, Katie shared.

Valaine said, “I am familiar with transplant children, so I understand the management of it, so that made it a little bit easier to do the care planning.”

She continued, “I worked with the parents to create a specialist care plan to make sure it reflected everything about Leia, despite her being non-verbal and having challenges. We wanted to make sure it captured everything about her so that our staff were able to support her well.”

A dedicated Healthcare Assistant named Sabrinah now manages Leia’s complex needs, providing overnight support, so the parents get some much-needed respite. It was important that Sabrinah was trained well and shadowed the family initially, so she could quickly identify complications, such as infection, as this can be very dangerous for transplant children. So far, with Sabrinah’s specialist care, diligence and clear communication, Leia’s made amazing progress and her parents know that she’s healthy and happy.

Katie said, “Sabrinah is so organised and makes amazing notes when Leia is unwell, which is helpful when we talk to a doctor and have all of the important information.”

Katie admires Sabrinah’s dedication, which brings joy and a smile to Leia. She continued, “when Sabrinah comes for the day shift, we’ve also started to go out because we really trust her. Sabrinah is so sweet with her and makes such a huge effort to make Leia happy – you can tell she really cares about her”.

Bright future ahead

With the support of our Children’s Complex Care team, Leia is now looking forward to having fun experiences like other girls her age. She is starting primary school soon where she’ll make new friends – something her parents didn’t think would be possible.

Katie and Tom are thankful for their support team. From their care assistants to their nurses, they couldn’t imagine a better team to support them. They’re excited for Leia to begin a new chapter in her life and see what the future holds for her.

“For us, it’s important we have the support because we can look after her better. I feel like I can face the day, even if she’s having a bad day and is upset or unwell”, Katie said.

Find out more!

Our Children’s Complex Care team help parents like Katie and Tom to navigate caring for a child with complex care needs. If your child, young person or client would benefit from specialist care at home, get in touch by filling out our quick form.

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