Hello,

My name is Sophie and I’m fundraising for my sister Juliette, her husband Dave and their little girl Wynter.

Over the past 2 years , I’ve watched them go through the unimaginable, losing their two beautiful daughters, Hope and Faith, to a rare genetic condition called ARPKD. No family should have to face that kind of heartbreak, let alone twice.

I’m sharing their story in the hope of helping them take a step forward towards growing their family safely through genetic IVF.

Please take a moment to read their story, and if you’re able to, support them by donating or simply sharing this page, every bit of kindness truly makes a difference.

Some things in life just don’t feel fair…

Over the past year, my sister Juliette, along with her husband Dave and their daughter Wynter, have had to say goodbye to two much loved babies, Hope and Faith. Watching someone you love go through that kind of loss twice is something you never expect, and it’s completely heartbreaking.

Last February, Juliette and Dave lost their beautiful daughter Hope Dorothy to a rare genetic condition called ARPKD (autosomal recessive polycystic kidney disease).

Juliette had a beautiful, happy pregnancy with Hope. She was just enjoying it, so excited, full of plans, imagining life with a sibling for Wynter to grow up alongside.

We didn’t find out anything was wrong until 34 weeks. At a growth scan, Juliette was told there was very little amniotic fluid around the baby. That appointment turned into another and then another, until they were sat in front of two consultants being told that Hope had ARPKD.

They were told there was a strong chance she would not survive pregnancy or birth and that her condition was considered incompatible with life. In that moment, everything they had hoped for came crashing down and they were left completely devastated, trying to process a reality no parent should ever have to face.

ARPKD is a devastating genetic condition that affects how the kidneys and liver develop. It causes cysts to form in the kidneys, which means they don’t function properly. In severe cases, like Hope’s, the kidneys cannot produce enough urine, which is what forms the amniotic fluid in pregnancy. Without that fluid, babies often cannot develop properly, especially their lungs. It can lead to babies being born too early, too poorly or not surviving long after birth.

Unbeknown to Juliette and Dave, they are both carriers of this condition. ARPKD is inherited in an autosomal recessive way, which means both parents have to carry the gene for a baby to be affected. This is something most people would never know, as carriers usually have no symptoms. When both parents are carriers, there is a 1 in 4 chance in each pregnancy that a baby will be affected. The chances of two carriers meeting and having an affected baby are incredibly rare, which makes this even harder to comprehend.

Hope was in that severe category.

From that moment, everything changed.

Hope was born and she survived for 30 precious hours. Thirty hours that felt like everything and nothing at the same time. Thirty hours where Juliette and Dave got to hold her, speak to her, love her and be her parents in the only time they were given… while also knowing how quickly that time was slipping away.

They named her Hope because that’s exactly what they had been clinging to since that 34 week scan… hope that somehow she would be the exception.

Hope now would be over a year old.

That reality doesn’t get easier. It comes in constant waves… watching Wynter grow and feeling the space where Hope should be beside her. Wondering what she would look like, what her little voice would sound like, and all the moments that should have been theirs to share.

The past year has been nothing short of heartbreaking for them. Grieving Hope, learning to live with that loss and trying to find a way forward through something that never truly leaves you.

And then, on what would have been Hope’s 1st birthday… they found out Juliette was pregnant again.

There was no joy in the way people imagine pregnancy should be. There was fear from the very first moment. Every scan, every appointment, every day carried the same question they couldn’t escape — is this happening again?

They were offered NIPT testing first. A blood test that screens for certain genetic conditions, giving risk levels but not always certainty. When those results came back, they showed that Dave’s gene was present. A devastating blow, and an early sign that they might be facing the same reality again. Every wait for results felt like holding their breath and not knowing when they’d be allowed to exhale.

Then came CVS testing.

CVS (chorionic villus sampling) is an invasive procedure where a needle is used to take a small sample from the placenta to test the baby’s chromosomes and genetic condition directly. It is physically uncomfortable, but emotionally it is something else entirely, lying there knowing you are testing your baby for something that could change everything again.

It is hope and fear in the same breath.

And then came the results they were terrified of.

Their baby also had ARPKD.

Everything just shattered all over again.

They were then faced with a decision no parent should ever be forced to make. Not a choice between good options, but between heartbreak and heartbreak. And with completely broken hearts, they made the decision to end the pregnancy because they couldn’t bear the thought of another baby suffering and because the risk of going through full term again with the same outcome was too much to carry.

It was the most painful decision they will ever make.

At 14 weeks pregnant, Juliette gave birth to their beautiful baby girl, Faith.

So wanted.

So loved.

So longed for.

Faith, alongside Hope, will be carried in their hearts forever.

People often talk about pregnancy like it has a guaranteed happy ending, but for some families, it doesn’t. Sometimes it’s fear from the very beginning. Sometimes it’s devastating diagnoses. Sometimes it’s loss at different stages that people never see or understand and sometimes it is making impossible decisions behind closed doors, while still loving their baby with everything they have.

This is what Juliette and her family are living.

They now know they cannot go through this heartbreak again in the same way. The only way forward for them to safely try and grow their family is through genetic IVF, creating embryos and testing them before pregnancy to make sure they are not affected by ARPKD.

IVF is not a simple or guaranteed path. It is physically, emotionally and financially exhausting. There are no promises. No certainty. Just hope… and faith.

They are so grateful for their healthy, miracle daughter Wynter, who is thankfully unaffected by ARPKD. But because of this, they do not qualify for NHS funding for IVF, meaning this journey would have to be taken privately, at a significant cost, with no guarantee it will work, but they still want to try.

Because more than anything, they want to complete their family. Hope and Faith are irreplaceable and could never be replaced. They will always be Wynter’s sisters in heaven, watching over her as she grows. There is a bond between them that cannot be seen, but will never be broken. An invisible thread of love connecting them, even though they are apart. They long for Wynter to grow up with a sibling here on earth; A healthy baby to run alongside her, laugh with her, and share a life with her.

That is what they are holding onto now.

I never imagined I would be writing this on their behalf, or asking for help in this way, but if you can support them in any way, whether that is donating or simply sharing their story. It would mean more than I can say, but after everything they have been through, I just want to do anything I can to help them find some light after so much darkness.

We are not sharing this for sympathy. Just honesty, awareness and for the families who live this in silence.

Hope mattered.

Faith mattered.

They will always matter