Helping Rose-Maria Move, Grow and Thrive

Hello, my name is Dayo, and I am the proud mum of Rose-Maria, affectionately known as Maria.

Maria is a beautiful, fun-loving and incredibly resilient 14-year-old girl living with a rare genetic condition called Joubert Syndrome.

If there is one word I would use to describe my daughter, it is resilient.

Despite the many challenges she faces, Maria continues to show remarkable strength, determination and an ability to find joy in the little things. She has undergone major surgeries, faces significant physical challenges and depends on others for almost every aspect of her daily life. Yet none of these challenges defines who she is.

Maria has a wonderful personality, a love for music, a beautiful sense of humour and a determination to make herself understood.

Although Maria cannot communicate through speech, she has a voice, and she deserves to be heard.

One of the most touching things she has ever expressed through her communication device was, “I want to speak with my own voice.”

Those words remind me that behind every diagnosis is a young girl with her own thoughts, feelings, preferences and a desire to experience life as fully as possible.

Maria’s Journey

Joubert Syndrome affects Maria’s development, coordination and movement. She has profound developmental disabilities, increased muscle tone and significant mobility difficulties.

She has undergone reconstructive surgeries on both hips and relies on a wheelchair for mobility. She needs support with everyday activities, including personal care, feeding, transfers and communication.

Despite these challenges, Maria continues to work incredibly hard to develop her abilities.

Through specialist physiotherapy at Mini Wonders, we have already witnessed encouraging progress.

Her hamstring flexibility has improved, and she has been working on supported four-point kneeling, movement exercises and treadmill activities.

These may seem like small achievements to some, but for Maria and our family, they mean so much.

Every improvement represents an opportunity for greater comfort, movement and participation in everyday life.

Why We Are Fundraising

We are raising funds to help Maria access three important therapies:

Specialist Physiotherapy: To help maintain and improve her flexibility, strength, posture and movement while reducing the impact of muscle tightness.

Hydrotherapy: To give Maria opportunities to exercise and move in a supportive water environment, helping her work towards her physical goals.

Sensory Therapy: Maria experiences significant sensory processing difficulties. Everyday noises, busy environments and unexpected sounds can become overwhelming and distressing.

We hope to access private sensory occupational therapy through NeuroFocus Therapy to better understand her sensory needs and develop personalised strategies to support her comfort, emotional regulation and participation in daily life.

Together, these therapies could make a meaningful difference to Maria’s wellbeing and quality of life.

Why Your Support Matters

As Maria’s mum, I want to give her every opportunity to reach her potential.

However, providing regular private therapies comes at a considerable financial cost.

Just 10 specialist physiotherapy sessions cost approximately £1,000, and Maria’s needs are ongoing.

Our goal is to raise funds that will help provide consistent physiotherapy, hydrotherapy and specialist sensory support, without financial difficulties interrupting her progress.

We understand that there is no cure for Joubert Syndrome, but we also know that every opportunity to improve comfort, maintain physical abilities and encourage independence matters.

For Maria, success is not necessarily about walking independently.

It may be sitting with better support, moving more comfortably, participating in activities she enjoys or finding new ways to manage overwhelming sensory experiences.

Above all, it is about helping her enjoy life and have opportunities to flourish.

A Message from Our Family

Maria has taught me that resilience is not about never facing difficulties. It is about the courage and determination she shows while living with them.

She inspires me every day.

As her mum, my greatest wish is not to change who Maria is, but to give her the support and opportunities she deserves.

Every donation, every share and every act of kindness will help us work towards that goal.

Thank you for taking the time to get to know our beautiful Maria and for considering being part of her journey.

With love and gratitude,

Dayo and family

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, they 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, any funds that cannot be used will be transferred to be used for the general charitable purposes of Tree of Hope.