A funeral for #HeartWarrior Daisy

Today is 11th of September 2023.

Many of you here will have followed Daisy’s story from the fundraiser I set up on 2nd July 2023. If you missed the fundraiser please follow the link below to catch up with her story and her journey through the info on the fundraiser & the “updates” section . And incase you missed it my name is Katie and I am raising money for my sister Emma Hart, my brother in law Ronnie Klimek and their beautiful baby girl, and my niece, Daisy Klimek.

Heart Warrior Daisy’s Parent’s Support Fund

I hope as you continue to read you will understand why I have set up a separate/new fundraiser to the one above for the same family & child…

Hi all

I have some heartbreaking news to share…

Daisy Samantha Katie Klimek passed away yesterday (Sunday 10th of September) in the early hours of the morning.

Daisy sadly went downhill quite rapidly last week and on the Thursday the 7th of September she had lots of seizures again, some were multiple in a short space of time. She also had another stroke. She still had not regained full movement on her left side of her body when she then had the second stroke. A C.T scan showed devastating results that Daisy now had severe brain damage. The initial brain damage from the first stroke was small and on one side of her brain, the second affected the other side and worsened the already affected side.

She was weak and very tired. A meeting took place between all the top consultants and surgeons involved in her care. Including the amazing Martin who is top surgeon in Europe for heart babies. She had the best care and chances with her team and the amazing care of GOSH hospital. But sadly Emma & Ronnie got the news that no parent ever wants to hear..

Daisy was now out of options

They said she needed to grow bigger in order for the full corrective surgery to happen which would help her massively but unfortunately she was only putting on small amounts of weight here & there.

She stopped responding to the medication which was needed due to too much flow going to her lungs. The fluid was not being removed from her lungs and the team all agreed that she was too weak for surgery. They said they could not operate as she would not make it. They couldn’t do surgery whilst fluid was still on the lungs and her lungs were too weak. On top of the fact that Martin really didn’t know what the excess tissue was and if she would survive with it removed. Her heart was too small and too complex.

Her parents were told that palliative care would come to see them on the Monday. As she was struggling so much they were about to put her on life support on the Friday morning. But my sister and Ronnie were told if she goes onto life support she won’t come off & she will pass away at hospital. My sister and Ronnie wanted to bring her home. So palliative care came not long after to see them.

And thanks to the amazing staff at the hospital they were able to sort transport quickly and Daisy was picked up at 3pm that same day They did not put her on life support.

So that same day on Friday the 8th of September Daisy finally got to leave the hospital & go home with her parents by her side.

Lots and lots of Daisy’s family and her parents close friends came to see her. The house was full with people and love. Rallying around Daisy & her parents. Poppy (Daisy’s sister) got to see Daisy and give her a cuddle. She read her a story.

Daisy’s nannies, grandads, cousins, friends, aunties, uncles, and more came to see her and be there.

Over the weekend Daisy held on for a long time. Through Friday night, Saturday day and night. Then in the early hours of Sunday morning her mum and dad couldn’t keep their eyes open any more & started to drift to sleep with Daisy in their arms. So did other family members who were there. And it was at that time when mum & dad, & family all quietened down & started to sleep that she passed away.

I like to think she felt that ‘mum and dad are sleeping now, I can sleep’.

She has been surrounded by love from the moment that she was born. And even more so over the last 3 days.

As you can imagine Ronnie and Emma are beyond devastated. This wasn’t how it was supposed to go And Daisy should never have had to be brave. But brave she was. She fought on and on beyond all the odds.

Now she is at peace. No pain. No suffering. No more needles. No tubes. No machines. No hospital wards or scans.

Now she has had the sun and wind on her face. Been out in nature. Been in her own cot and in her own home. And tomorrow she will take her first trip out as a family to the funeral directors, with my sister and Ronnie holding Daisy.

Up until Friday she had never seen the sky or been around nature. She hasn’t been outside of hospital since the moment she was taken to gosh only 6 short hours after being born. But even then she was on life support & was urgently being transported to GOSH.

So her loving, amazing parents wanted her to experience those things & be away from the hospital.

She has stayed at home after passing away early Sunday and is still at home now. Spending more time with her parents.

Tomorrow when she goes to the funeral directors the next leg of her parents journey begin. I don’t know how they are still standing.

They are surrounded by support and love but nothing can alleviate the pain and heartbreak they must feel from losing their beautiful baby and child.

A beautiful soul gone way too soon.

I wanted to take this time to say yet another thank you to every single one of you that donated to the original fundraiser which I set up to try to support Emma and Ronnie financially whilst Daisy was in hospital in London. Because now that time spent with Daisy that they had at the hospital is even more precious. Thanks to every single one of you, you gave them time with their child with less to worry about. You provided comfort at an awful, scary and difficult time. And you prevented them from ever getting to a place were they would have to seriously start thinking about one of them returning to work and being separated as a family. Something neither of them wanted to do. And thank God they stayed and for the original fundraiser. Because they spent as much time with her as they possibly could.

And for anyone knew to the original

fundraiser, thanks to amazing donors and everyone who shared we raised an amazing £3935 which was used to support Emma & Ronnie financially throughout their time in hospital with Daisy.

Obviously none of us ever in a million years thought we would be here. And certainly not her parents. I feel helpless again & again feel the only thing I can do is fundraise, only this time for a funeral .

I can’t tell you how loved Daisy was & is. How many lives she touched. Even though her sometimes hours, often days, were filled with such difficulty & pain. How much she went through in her short tiny life is awful & not fair. Although nothing can bring her back, a funeral filled with flowers or however her parents wish to honour her will bring some comfort & relief to her broken parents. And as Daisy’s Auntie I want her to have a beautiful send off, to honour her life & give her family all they need in order to say goodbye & lay her to rest.

I will of course update as much as I can with where the money is going & what has been planned. Her parents aren’t in a place this second to think past anything other then spending time with Daisy. So I will update as I know more.

For now, I imagine, the money raised will go towards:

- flowers (of course some Daisies)

- a plot (if being buried)

- gravestone or plaque

- a coffin

- order of service booklets

- funeral car to transport Daisy & her closest family to the service

- a service including priest or equivalent

Her parents won’t get to see her take all of her “firsts” or see her go to prom. And I just hope if we can raise some money for them then they can do what they need to, to try to celebrate her life.

And provide more memories for them to cherish for years to come.

Thank you for every email, comment, message, love sent their way, Daisy’s way or in aid of them. I may not have got back to them all, nor my sister and her partner. But please know they have provided some comfort in the very darkest of days.

love to you all,

Katie xo

(And more importantly, Auntie to Daisy)

Original fundraiser from 2nd July 2023:

HeartWarrior Daisy Original Fundraiser