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Thea’s Story @ Clare’s Little Bears

Thea Harris was born with a complex genetic condition – Alagille Syndrome.

The symptoms of this condition mostly affect her internal organs; her heart, liver and kidneys are malformed and as such do not work as well as a healthy child. This leaves Thea with further complications – shortness of breath with low blood oxygen levels, fatigue, jaundice, and the inability to affectively absorb vital vitamins which has resulted in poor growth and physical development and osteopenia (weak bones).

Thea has already had several broken bones in her short life and the last was a severely fractured leg which, due to her condition, meant it wasn’t straightforward in its repair. This has resulted in Thea not being able to walk unaided, requiring almost constant supervision and the need for a walker/wheelchair to give her any kind of independence when mobilising.

Unfortunately, Theas medical situation is extremely complicated; surgically, there is nothing that can be done to offer a solution to her complications, and we are in the position that she is now receiving palliative care.

We, as a family, wanted Thea to have as much as a happy and ‘normal’ childhood as possible, while she is able, and we felt attending pre-school/school would give her the opportunities to make friends and enjoy learning etc.

When choosing a preschool setting for Thea, we had a very high level of criteria that we wanted meeting. Clare’s little bears was top of the list. From our very first walk around and discussions with Clare and the preschool staff, we were entirely confident it was right for Thea and our family.

Over the years that Thea has been at Clare’s Little Bears, they have proven us right time and time again and have beenunwaveringly accommodating, flexible, caring, and professional. They have regularly gone above and beyond to make Clare’s Little Bears more accessible and inclusive to Thea and have shown an infinite amount of empathy and compassion towards Thea and our family. In all honesty, it has been a welcome sanctuary for her, particularly as she spends a lot of the time in hospital.

Thea’s younger sister will also be joining in the next school year and we are so happy knowing that even though she doesn’t have the disabilities that Thea has, Clare and the team will care for her and continue to strive to make Clare’s little bears as accessible and inclusive to her and all children that pass through their doors, hopefully for many years to come.

Sincerely

Paul & Rachel Harris