Maria and Steve: providing for a child with DDX3X syndrome
Maria and Steve have a 15-year-old daughter with a rare genetic condition called DDX3X syndrome. They came to Rhiannon after a friend heard her deliver a talk on wills and trusts for children with special needs, to ask for support in setting up provision for their daughter.
Trusts | Pensions
Our daughter Alex’s condition is a rare one that affects her in many ways. She has autistic traits around behaviour and communication; she has learning disabilities, and she has sensory processing difficulties too.
She's also got a CVI - a cerebral visual impairment - which means she can't judge the speed or distance of cars, for example, so she wouldn't be safe crossing a road on her own. And she has high anxiety, mostly around sounds, which creates a fight or flight reaction in her.
The result is that she is unlikely to lead an independent life. When we’re gone, she’ll need other people to administer her money for her because she’ll be vulnerable to predators and to just giving away all her money. She currently has a very limited concept of both money and time.
“When it came to setting up the wills and trusts, Rhiannon was absolutely invaluable. She knew the hurdles that we were likely to face, the problems we might encounter and explained the options that were available to us so that we could confidently make informed decisions for Alex’s future.”
Cutting through the legal jargon
It was a friend of ours who heard Rhiannon speak about creating wills and trusts for children with special needs. She told us about what had been covered and, as we’d been thinking about how to plan for Alex’s future for some time, we thought that Rhiannon sounded like exactly the person we needed to guide us.
What struck us particularly was the difference between her and the solicitor we’d seen previously to write our original wills. When we came away from the meeting with the solicitor we thought, “What on earth is she talking about?” We’re educated, intelligent people but she used so much legalese and jargon and obscure terminology that we couldn’t understand her explanation about setting up trusts at all.
Rhiannon talks in a way that we can understand and explains everything so well. If we don’t understand something it’s easy to say: “Rhiannon, I know I've asked you this twice before, but please explain it again because I just don't get it.”
With some people you’d feel awkward about doing that because you'd feel like an idiot, and that you're imposing on their time. But you never feel like that with Rhiannon.
And because of her own situation, she has a lot of empathy. When it came to setting up the wills and trusts, she knew the hurdles that we were likely to face, the problems we might have and the options that were open to us. She didn’t dictate to us but gave us her considered thoughts and recommendations, which was really helpful.
Continued support in changing circumstances
Having explained everything to us, Rhiannon recommended us to a specialist solicitor who drew up new wills which incorporated a discretionary trust. She also helped us with our pensions and our investments, still continues to do so and hopefully will do for a very long time!
We originally had our pensions elsewhere, but we realised that the financial advisor looking after them wasn’t really keeping us informed. They retired and handed us over to someone else, and he just wasn’t very proactive. Now that Rhiannon oversees our pensions, we are confident that she checks regularly to make sure they are always performing the way we need them to.
Our circumstances have changed since then too. We went through a relationship break up and needed support to help the solicitors separate our finances while still providing for Alex and not impacting what we’d set up for her. We called Rhiannon and she actually spoke to the solicitor for us to make sure it was all handled correctly.
An ally who understands
There are very few people that you come across who you would wholeheartedly recommend without any reservations at all, but Rhiannon is one of them. We’ve recommended her to several friends - with and without children with special needs - and they’ve always been really grateful that we did. She’s someone who you warm to immediately and we’re always happy to talk to her. When you’ve got a child with special needs it’s rare to find anyone who can genuinely empathise with your situation, someone who you feel is really on your side and there to help. But with Rhiannon we feel so lucky because that’s exactly who we’ve found.”
Will writing involves the referral to a service that is separate and distinct to those offered by St. James's Place. Wills and Trusts are not regulated by the Financial Conduct Authority.
