Darren Thompson: Saving Etta

With Darren Thompson, Regional Head of Sales & Etta's Dad

Reflecting the current trend of loved ones moving closer to one another following the pandemic, when asked of the importance of family, the answer is usually along the lines of being “the single most important and influential element of an individual’s life”. Perhaps most crucially, the emphasis here must be individual, and speaking on a personal level, the catalysed significance of family has been driven by the need for support during my daughter Etta’s battle with chronic lyme disease and  PANS/PANDAS. 

The natural desire to be near to loved ones can be described as a magnetic emotion subtly evident at every life stage; each life chapter proposes new needs for support from family members, and as we explore what it means to be connected in a digital, post-COVID era, this means something different to each of us. Our recent community findings discovered that 65% of our customers move to a Lifestory development to be better located to family.

By contrast, my relocation to Wales was decided by a need to be near my wife Tess’s family for the physical, mental and emotional demands of coping with our four year old daughter’s illness. We have all battled together through her tough start to life, Etta was born six weeks early due to growth restriction and then unfortunately was given the wrong dosage of medication, resulting in a need for a full blood transfusion at just five days old. Thankfully, she bounced back, we had our perfect, energetic, fun-filled daughter up until twelve months ago, and then, seemingly overnight, we lost her to an undiagnosed illness. 

Chronic illnesses of any kind completely overhaul a family’s life; small intricate moments that were once part of your collective normality are replaced by measures of a new, regulated routine. We are especially challenged by the rarity of Etta’s condition; just a handful of specialists in the UK fully recognise and understand her symptoms, which range from OCD, ritualistic behaviours, debilitating anxiety, rage and a range of emotional and sensory issues.

Yet there’s an unwavering hope in each of us in the knowledge that a team of  doctors are able and willing to treat Etta’s condition. Etta can fully recover if interventions are made promptly. In some Westernised countries such as the US, it is estimated that one in two hundred children suffer in the same way Etta does, they know her illness and can treat it; there’s a chance we can have our vibrant, zestful daughter back. We have missed her. Unfortunately here in the UK we are slightly behind when it comes to both the understanding and treatment of both chronic lyme and PANS/PANDAS.

Our good friend Sarah set up a GoFundMe page for Etta, having witnessed her progressive health decline over the last year or so, in the knowledge of everything she overcame in the first months of her life. My daughter is a fighter - the very bones of her are resilient and she will recover from this. She just needs our help to get there. 

This opportunity can only be made possible with the help of the wider communities in and around our business. Please share Etta’s story and donate if you can so that she can get the treatment she needs, and have the life every child deserves. Please help us bring her back. 

From my family to yours, thank-you for any help you can provide. Family truly is the most important and influential element of life.