They were born in Los Angeles at 4.45pm and 4.46pm on 6th April 2019, into a world of X -rays, MRIs, EEGs, heart echo scans, lab draws, IVs, blood transfusions...
And after 56 days in a neonatal intensive care unit, mum Polly and dad Sam finally took them home.
To describe Fox and Lili as unique is an understatement. Their diagnosis is so rare it hasn’t been reported in another human.
They share a genetic condition that is a medical first and so their team of doctors can’t give a long or short term prognosis for either of their lives.
Polly and Sam don’t know what the twins future will look like but are focusing on early intervention therapies because despite what they’ve been told, they believe in their children. They are also managing the immediate and complex set of health issues the twins have.
Lili Rose has Adrenal Insufficiency which, without daily doses of steroids, means minor infections can become life-threatening illnesses.
And both suffer from Hyperinsulinism, a condition that can cause seizures, brain damage or death – this inability to regulate their blood glucose levels means feeding Fox and Lili precisely is incredibly important but incredibly difficult too.
Fox’s neurological issues have meant he has struggled to feed and Lili Rose, who is under weight and has a cleft palate, requires Polly and Sam to focus on feeding around the clock to avoid either of them needing invasive feeding tubes.
Fox and Lili’s healthcare depends heavily on the medical insurance cover that Sam works to provide, but the insurance doesn’t cover everything and each day creates new challenges, physical and financial.
Lili Rose has been to the ER several times and recently spent another 14 days in hospital for suspected pneumonia: a side-effect from one of the life-saving medications she takes daily...
Both babies have numerous hospital appointments, almost on a daily basis, to monitor their health and development but as they grow, so do the list of medical concerns.
Caring for this duo is a full-time job for two people but Sam’s work requires lots of travel away from home, leaving Polly to be full-time nurse and super mum.
So far, family have travelled from the UK to provide support but costs and visa restrictions mean this isn't a long-term solution, and so the immediate need is to raise funds for the extra care and support needed to allow the family the strength to focus on the early interventions that will make a huge difference to these kids’ lives.
As parents, Sam and Polly have the greatest expectations for their children and our hope is that we can provide a financial lifeline to allow Fox and Lili Rose to achieve their best possible life and try to make every day an adventure for these two tiny superheroes.
We are deeply grateful for all and any help and support you can offer to these babies in a billion x
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Fundraising team: Loved ones of Fox and Lili Rose (16)
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