Meet Grace-Louise Darroch: Living Life to the Full with CDKL5 Deficiency Disorder

Living in Renfrewshire with her mum Leeann, dad Alex, and three older brothers, Grace-Louise Darroch, affectionately known as Minky Monkey, is embracing life despite her diagnosis of CDKL5 Deficiency Disorder (CDD)—a rare genetic condition occurring in just one in 60,000 births. Grace-Louise loves rough and tumble games with her brothers and is known for her infectious smile.

Early Challenges: A Diagnosis Journey

Grace-Louise’s journey began shortly after her birth when she struggled to feed. Soon after, she started having frequent seizures. Diagnosed with CDD at just three months old, she faces significant challenges, including:

• Uncontrollable seizures
• Developmental delays
• Sleep problems
• Visual impairment

In December, Grace-Louise’s condition worsened, and she lost essential skills, including swallowing and walking. However, her family realized that these setbacks were not typical of CDD, sparking hope for relearning these skills.

Family Support and Fundraising Initiatives

With both parents working full-time, Grace-Louise's Auntie Linda-May Ruxton stepped in to lead fundraising efforts for specialist therapies and equipment. The goal is to ensure Grace-Louise can achieve her full potential while embedding therapy into her daily life.

Linda-May shared, “Every aspect of Grace-Louise’s development is affected. Simple tasks like getting dressed or feeding take much longer.”

The family chose to partner with Tree of Hope, a registered charity that allows them to benefit from Gift Aid and corporate support. Linda-May expressed gratitude, stating, “Having a charity number has been invaluable for fundraising.”

Successful Fundraising Events

Setting an ambitious target of £100,000, the family launched Grace-Louise’s campaign with a Warrior Princess Tea Party in April 2024. Initially intimidating for Linda-May, the event raised £5,000, which was tripled by Alex’s employer through their charitable foundation.

The success of the tea party sparked other fundraising events, including:

• 13 members of Garnock Rugby Club climbing Ben Vane with extra weight.
• A school PTA "Break the Rules" Day for student involvement.
• Upcoming Halloween party and a hike, swim, and run organized by local Young Farmers.

Advice for Fundraising Families

Linda-May offers valuable advice to families in similar situations:

• Approach local businesses that may be willing to help.
• Be specific about your needs when asking for donations.
• Encourage people to engage by taking photos with Grace-Louise’s poster.

Linda-May notes, “The community's support has been overwhelmingly positive, turning our challenges into an uplifting experience.”

Follow Grace-Louise’s Journey

Inspired by Grace-Louise’s story? Follow her progress and find ways to support her at Tree of Hope - Grace-Louise Darroch.