Our amazing niece Aoibh is 4 years old and is your typical 4-year-old girl who loves everything Disney Princesses and Frozen, arts and crafts, dressing up, swimming, and playing with her cousins and friends.

However, Aoibh has some very stark differences and challenges to other 4-year-olds; she has a rare and complex physical disability. Aoibh has a condition called Arthrogryposis Multiplex Congenita (AMC). The type of AMC she has affects 1 in 10,000 children. Arthrogryposis is characterised by stiff joints and weak or missing muscles, causing severe contractures around the joints. Both Aoibh’s arms and legs are affected. This severely impacts her mobility, and her ability to function and participate in everyday activities that most of us don’t have to give a second thought to completing.

On the day Aoibh was born, the lives of our sister Eavan and her husband Philip changed forever in a way that they never anticipated. Aoibh was a perfectly healthy baby, but her body was born “frozen”. Only her head moved. Her arms were locked straight and didn’t bend. Her wrists were bent and couldn’t move, and her hands were closed so tight that they couldn’t be opened. Her knees were stuck bent and crossed over each other. Her feet severely clubbed with her toes touching the front of her legs. She mimicked a Buddha position, but none of her limbs moved or could be moved or stretched out.

Aoibh’s condition only affects her physically. She is not affected neurologically or intellectually. Aoibh is exceptionally bright; her problem-solving skills are like no other, and she figures out her own way of doing everything. She is unbelievably witty, wonderfully social, self-confident, and fiercely independent. Her determination and willpower are nothing short of inspirational. Most importantly, Aoibh is the happiest 4-year-old you will meet with incredible tenacity and resilience.

Aoibh has two brothers who she absolutely adores – Leo (6 years old) and Conn (8 months old). Aoibh is currently in preschool and is due to start Junior Infants in her local primary school next September. She has an amazing sense of belonging and acceptance in her local community and, no matter where she goes, she brings a smile to everyone she meets and chats to. Aoibh has the unique ability to touch everyone she meets in the warmest of ways.

Aoibh loves life. She embraces her Arthrogryposis as part of her identity. She knows that her body is different but is proud of the ‘super smart’ brain that she has been given. She can become frustrated at times with her body’s limitations, but she has a fantastic attitude and positive nature. Aoibh talks about becoming a Doctor or a Therapist like her Mammy one day. We have no doubt she will.

However, in her short four years, Aoibh has endured more than many will do in their entire lifetime. Aoibh spent much of her early weeks and months in Temple St. Children’s Hospital. She had major Orthopaedic surgery at 3 months old which was life-changing for her; the success of this surgery meant her legs could straighten and her feet could plant to the ground.

When Aoibh was a baby, her surgeon wasn’t sure if Aoibh would ever be able to achieve sitting to sit in a wheelchair. Walking wasn’t even mentioned as it was never on the cards for her. But, Aoibh being Aoibh, and with intensive therapy and relentless effort, she started walking independently at 2 and a half years old. She has met many health professionals over the years, and she baffles everyone she meets with what she achieved and overcome. She is truly miraculous.

This success hasn’t been without hardship and adversity. Eavan and Philip have devoted everything they have to helping her succeed and now they need help as they continue on their mission to leave no stone unturned for their beautiful little girl. They have spent their entire life savings to get Aoibh where she is today, and she is an absolute credit to them.

However, Eavan & Philip have now exhausted all their options financially to help Aoibh and they have nowhere else to turn. And, unfortunately, the nature of Aoibh’s condition means that, as her little body grows, it wants to revert back to how it was when she was born. Growth is her body’s worst enemy. So, it is a constant battle to maintain her flexibility and strengthen her muscles as she grows. Her day-to-day life consists of a rigorous routine of massage and stretching, amongst daily OT and physiotherapy. Unfortunately, her left leg has become extremely stiff and no longer bends at all. Both of her hips are dislocated, and her hip flexors have become excruciatingly tight and painful. They have received a very worrying prognosis unless they intervene as soon as possible. It is only a matter of time before her hips become severely arthritic, and she develops scoliosis. It could be even sooner than this that she loses her ability to walk and even her ability to sit upright. Intervention is required urgently, and it involves complex surgery of her hips and legs, and an extensive period of recovery and rehabilitation over 9-12 months. Due to the rarity and complexity of Aoibh’s condition, there is currently no surgeon here in Ireland with the specialist training and skills to complete her surgery. Therefore, they need to travel to the US to have this surgery done.

In early January 2026, Aoibh will travel to Baltimore, Maryland to undergo surgery at The Rubin Institute of Advanced Orthopaedics; one of the world centres of excellence for limb reconstruction. She is required to stay in Baltimore for follow-up care and intensive therapy for 6-8 weeks post-surgery. Aoibh will have to wear a custom-made hip abduction brace for up to 6 months after her surgery. She will also be required to attend weekly physiotherapy privately in Dublin when she comes home for ongoing rehabilitation and monitoring.

Having a child with a rare condition and disability has had an immense financial strain on Eavan & Philip. The financial implications of trying to ensure Aoibh receives the care she needs and deserves during these critical years of her life has been a huge source of emotional distress for them. Their upcoming trip to Baltimore will have a hugely significant impact on their family life, including uprooting their family to live there, pulling their 6-year-old out of Senior Infants, and both of them having to take leave from their jobs for an unknown amount of time.

We want to do what we can as a family to help support Eavan & Philip during this extremely difficult time. We want to ease this financial stress and burden on them through this fundraising campaign. The funds donated will be used to cover part of her surgery costs, accommodation and living expenses during their months in Baltimore, their ongoing expenses and bills still to be paid at home whilst they are away, the extensive medical costs of Aoibh’s non-surgical treatments including Radiology, Physiotherapy, Occupational Therapy, specialist equipment, orthotics & bracing; and ongoing consultations. Aoibh will be required to return to Baltimore on several occasions this year for monitoring and potential removal of hardware which will require further surgery.

We cannot express our gratitude enough to everyone for helping and supporting Eavan & Philip amidst their current circumstances. We have no expectations; however we truly appreciate the kindness and generosity of people and want to take this opportunity to thank you for supporting our fundraising campaign for Aoibh.

Thank you for taking the time to read about Aoibh’s story. She may be 1 in 10,000 on paper but she truly is 1 in a million to us.

From the McCrudden & Rooney families.