Ewelina Kowalska and her husband, Marcin, live in Exeter with their two sons, Filip, 12, and Hubert, 8. She explains how expert advice has helped them to make sure their boys are taken care of – and brought her priceless confidence for the future.

Ewelina

Meet the Kowalski family

It’s a parent’s prerogative to worry about their children. But as any parent of a child with additional needs will attest, those worries can become all-consuming when there are considerations such as, “Who will care for my child if I’m not around?“

Ewelina Kowalska’s son Filip was 6 months old when he was diagnosed with Down’s syndrome. It came as quite a shock. During her pregnancy, her genetic test for the congenital condition had indicated she was low risk.

“It’s a day I remember still. I don’t know why, but my first question was: ’Will he be able to read?’ I don’t know why I asked that. He’s 12 now, and reading is not his favourite thing to do, but I think he will be reading one day,” she says.

What’s far more important to her now, she says, is knowing that he is happy and enjoys his life. “And he teaches us to enjoy our lives too.”

As a natural problem-solver, Ewelina had always tried not to dwell too much on the future. Her focus over the years had been on ensuring Filip had the best possible care in the present.

“There are constantly things that parents of children who have additional needs have to do. You think about them all the time, but you don’t think about them from a financial point of view.”

“It’s not fair if they don’t have the same opportunities to enjoy the inheritance we leave them”

Ewelina Kowalski,
Client

Eye-opening advice

hug

Ewelina met Rhiannon, a St. James’s Place Partner who specialises in financial advice for families with vulnerable dependants, on the recommendation of a fellow parent of a child with additional needs. “I Googled her and discovered, luckily for me, she was putting on a webinar in a few days.” 

It was June 2021, and Ewelina and Marcin had recently seen a solicitor and had Wills drawn up that left their estate to Filip and their second son, Hubert, who is four years younger. Although Ewelina had explained that Filip had Down’s syndrome, the solicitor had encouraged them to go ahead with simple Wills. 

Over the years, Ewelina had received lots of charity support with Filip’s physical, social and emotional needs, but when it came to planning for the future, there was nothing. 

During Rhiannon’s webinar, Ewelina realised there were many complicated financial issues she needed to consider regarding estate planning and making sure Filip would be taken care of in the future. The key point Rhiannon made was that parents of children with special needs should consider setting up a trust for their disabled child. 

Ewelina learned that if Filip were to inherit half of his parents’ estate without a trust in place, he would then be responsible for managing his own financial affairs – something he would not be capable of doing. “It was eye-opening for me,” Ewelina says of the webinar.

What is a trust?

A trust is a legal arrangement for managing assets, such as shares, money or property. Decisions on what happens to those assets are made by trustees, who are appointed by whoever sets up the trust (the settlor). Trustees must act in accordance with the settlor’s wishes – which will be set out either in the trust deed or their Will.

There are several kinds of trusts, each with a different purpose and different tax regulations. Choosing the right type to suit your wishes and setting it up can be complex, so always seek guidance from your financial adviser.

Trusts are not regulated by the Financial Conduct Authority.

“There are constantly things that parents of children with additional needs have to do. You think about them all the time – but not from a financial point of view”

Ewelina Kowalski,
Client

Ewelina and Marcin decided to speak to Rhiannon to get personalised financial advice about setting up a trust for Filip. This would allow them to appoint someone to manage Filip’s assets for him, and to state their wishes for how the money would be used to safeguard his future. 

It would also mean, crucially, that Filip’s right to means-tested benefits and other help from the state wouldn’t be affected. “Without the trust, if he had to live in supported accommodation or needed a carer to look after him, he would have to pay for it himself until his money ran out,” Ewelina explains. “That is not what we wanted for him.” 

This would then leave Filip with no means of supporting himself, forcing him to live out the rest of his life entirely reliant on the state and in a very different financial situation from his younger brother. “I wanted to make them equal, so they both have the same quality of life. It’s not fair if they don’t have the same opportunities to fulfil themselves and enjoy the inheritance we leave them.” 

Ewelina immediately felt a connection with Rhiannon: “She has a child with special needs herself. And she told us she worries about him every day, but at least she knows she has done whatever she could to make sure that, financially, he’s in the right position and his future is secure.” 

Thanks to Rhiannon’s advice, Ewelina and Marcin also legally appointed Ewelina’s siblings in Poland, along with a lawyer, to manage the trust and Filip’s financial affairs in the event that the couple die before Filip. “I hope it will never happen,” she says. “But it’s a big relief knowing that it’s all in place.” 

Rhiannon also helped Ewelina to write a ‘letter of wishes’ to inform any decisions made in the future on Filip’s behalf by the trustees.

“Rhiannon guided me. She said you can put anything that Filip likes to do now, such as going on holiday or going to the cinema, that you think he would like to do in the future,” Ewelina says. 

It felt good to be able to write down how she and Marcin wanted their money to be used for Filip. “If my sister wants to take Filip for a holiday, I didn’t want the lawyer to step in and say: ‘No, that’s not the right use of the money.’”

The future secured

Filip is 12 now and loves watching movies, listening to music and playing in the park with his friends. “What matters to him is enjoying life,” says Ewelina. “He just wants to be happy.” 
 

 

He attends a specialist school for children with additional needs, where he is learning how to cook, go to the shops and travel independently. “We want him to be able to go places with his friends and do the things he wants to do,” says Ewelina. “The school helps with that.”

And while parenting a child with Down’s syndrome brings challenges, it has also taught Ewelina and Marcin to appreciate the everyday joys in life, the way Filip does. “He is our sunshine,” says Ewelina. “He has shown us how life should be.”

ewelinas boys

Thanks to Filip, she has met many amazing friends, who are like family to her now, she says. “My friends and I say an extra chromosome means extra love.” 

After Ewelina consulted Rhiannon and made decisions about Filip’s long-term future, she felt as though a weight had been lifted from her chest. “I felt such peace of mind,” she says. 

Despite this, she still tries her best to focus on the present. “It’s hard to think too much about the future when you have a child with Down’s syndrome, because then you end up in a bad place,” says Ewelina. “I’ve got two best friends who each have a child with Down’s syndrome. And what we say to each other is: ‘We have to live one day longer than our child.’” 

This is not, she thinks, what most parents want. “No parent wants to experience the death of their child. But I think, for Filip, we just want to make sure he is fine, until his very last day,” she says. 

“That’s what we want most of all.” 

This is just one client’s story and each situation is unique. The advice given to Ewelina was provided after a full evaluation of specific needs, circumstances and requirements, and was correct at the time it was given. The solutions provided may not be suitable for everyone, and the information provided here does not constitute advice.

“It’s a big relief knowing that everything is in place”

Ewelina Kowalski,
Client

The SJP view: protecting vulnerable family

Conversations about who to leave your estate to are emotional – particularly if you need to consider a vulnerable family member and what will happen when you’re no longer able to look after them. 

That’s why it helps to involve a financial adviser. They can explain your options and give you confidence to make the right decisions.

In particular, they can advise on: 

  • having the right insurance to protect your loved ones 
  • making a Will 
  • arranging a Power of Attorney (which can be done at any time and only comes into effect when needed) 
  • setting up a trust, such as a vulnerable person’s trust, which can be very tax efficient 
  • ensuring your wishes for that trust – and other assets such as your pension – are carried out after you die. 

Please note that advice relating to a Power of Attorney, Wills and trusts necessitate the referral to a service that is separate and distinct to those offered by St. James’s Place. These are not regulated by the Financial Conduct Authority.

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SJP Approved 07/05/2025