Meet the Families

Founded in 2005, our aim is to provide support and information for all those affected by cavernoma including friends, family, carers and professionals.

Get to know some of our CaverFamilies by reading their stories below. Find out more about the support they receive and how CAUK helps their family as a whole. 

Meet the Family : The Smiths

When Zane was first diagnosed with Cavernomas it was a complete unknown to us, we struggled to find information about this rare disease and found it hard to gain any knowledge.

Then my husband Lee found the cavernoma Alliance. The relief was unbelievable and the first time we went to a caverhub and met a few other families we stopped feeling so alone.

That is when Lee decided he wanted these kids to meet up yearly and grow up together so whenever one of them was having a rough time they would always have someone who understood. That is when CaverFamilies was born.

Over the years we have grown in size and met more and more families and we are now like one big extended family.

The weekends we get together we know we are around people we don’t have to explain anything to they just know. The kids play like they have never been away from each other and the parents talk, laugh and cry together. It’s the best therapy ever.

We would be lost without caverfamilies, we have made lifelong friends and have so much support. It’s just amazing to know someone is always there at the end of the phone or on FaceTime and when we meet it’s like we’ve never been apart ❤️

Meet the Family : The Holts

Cavernoma Alliance UK (CAUK) has been a lifeline for our family since we joined in April 2013. My son Ollie was two at the time we joined, he had been diagnosed with multiple Cavernoma following a stroke. We had very little information on Cavernoma and most of the doctors and nurses knew very little, many had never heard of the condition.

CAUK provided us with lots of information, the opportunity to hear and speak with lots of professionals experienced in Cavernoma and they also provided us with details of an experienced neurosurgeon to get a second opinion which allowed us to make an informed decision on Ollie’s treatment.

Most importantly to us, through Caverfamily events and residential weekends Ollie has been able to meet and form relationships with other children who understand him and who he can be himself around. To know he will never have to grow up feeling alone is so important to us all. The children also get to have some well-deserved fun.

We as parents also get a great deal of support through CAUK. We can talk, support and share experiences with each other, we can hear and speak to professionals and receive counselling, information and advice.

Ollie’s school and clubs have also received support and information from CAUK. CAUK have and continue to support us through the toughest of times and we will forever be grateful.

Meet the Family : The Wilsons

Hi we’re the Wilson family. We joined caverfamilies in 2015.

Our daughter got diagnosed in 2007, and had craniotomy surgery to partially remove her frontal lobe Cavernoma. We didn’t know anything about this fantastic charity till years later.

Caverfamilies has been a brilliant support, the residential have made my family feel supported and not alone, and my daughters feels she’s not different. All the families come together as a big family and support each other. The forums have thought us so much about my daughters condition.

It’s a brilliant charity going above and beyond and we can’t thank them enough.

Meet the Family : The Standlands

My son Joe collapsed when he was two years old, and my world came crashing down.

Daniel was only 10 days old and Joe had been a perfectly healthy boy with no sign of anything wrong. He went from being able to walk/talk/eat/dress himself to being laid in hospital unable to move or speak. He was tube fed and unable to move his eyes let alone swallow.

He was diagnosed with a cavernoma in his brain stem.. and as far as we knew we were the only people with it.

There begun a long and lonely road. Hospital appointments, physio and a child asking why he was different and feeling low. He had right side weakness so couldn’t join in with friends and was laughed at for being wobbly. Years went on and Joe had more bleeds, recovering each time but mentally getting worse and worse until he would just lay in bed and cry. He was 7 when he planned his own funeral because he thought he was going to die. My heart was broken, because he was giving up.

We found caverfamilies and joined the group. We nervously attended our first meet up but were met with open arms. At the meets children can speak to counsellors, other parents, other children and they can feel part of something. Joe doesn’t feel alone anymore. He sees the strength of others and he pushes forward. He’s so lucky, in that he completely recovered. He gets tired easily but that aside he’s a healthy and well 16 year old. Mentally, he’s so much brighter because he’s got a lovely group of people to be with who are just the same as him, and who are friendly and welcoming and we are so glad to know them.
Thankyou CAUK for all that you do.

– Natasha Standland

Meet the Family : The Smiths

Hi, my name is Lucy, I am mum to four children (six if you include my husbands two) and one of my children has been diagnosed with multiple cavernomas.

It was when Darcey, my third born, was three, my whole world turned upside down. Seizures began and we had a lot of confusion about the condition, with mixed information from doctors.

Getting the right answers was extremely difficult, until I found CAUK. Straight away we were welcomed, introduced to the other families and given the opportunity to tell our story and hear theirs.

This was such a confidence builder and really empowered me as a parent with a child who has a serious condition. We joined CAUK in 2014 and you can not put into words what they have given to us as a family. Our lives would have been very different without these wonderful people in our lives.

Meet the Family : The Thompsons

Our first contact with Cavernoma Alliance (CAUK) was when my husband Gary was rushed into hospital on the 28th April 2018. Gary was taken ill at 2:50am, he suffered the most horrendous seizure whilst asleep. He was completely unconscious and unresponsive. 

Myself and one of my son‘s Matthew, who still lived at home at the time and Hannah thought he was going to die as his eyes rolled into the back of his head, the left side of his mouth dropped and he was making the strangest, scariest noises whilst trying to breathe. Cutting a long story short, after spending several days in hospital and being told on admission, after a ct scan that Gary had secondary brain cancer, it eventually became clear that he didn’t have cancer at all, but what he did have was a rare genetic condition named Multiple Cavernous Haemangiomas (Cavernomas) caused by Krit 1 gene mutation 12-13 deletion. 

Gary was discharged after 5 days in hospital with very little information or knowledge of what was really wrong with him. Nothing was explained as they didn’t have a clue what a Cavernoma even was. It was only diagnosed after a telephone conversation I made to a family member on Gary’s mum’s side of the family and they told me that 2 out of 3 brothers from the same family had Multiple Cavernoma (Krit 1), so they emailed me the information and I took it into the hospital. 

A neurologist came to see Gary and I just prior to discharge and he handed me a scrap of paper. We were all so scared and felt so very lost! Little did we know that the scrap of paper with Cavernoma Alliance UK written on it, would end up being the most valuable piece of paper ever! 

As soon as we were home and settled I seriously struggled as I was terrified to go to sleep. Even our eldest son Christopher who had his own home stayed for a week as he was terrified too! We felt very abandoned and unformed about this rare condition. 

One evening, I went to bed and just like every other night since Gary came home, I couldn’t sleep. So I decided to look up the website given to me on that scrap of paper. I instantly made contact with the charity and spoke to several lovely members of CAUK that very night, or should I say morning, as it was during the middle of the night. They shared experiences with me and made me feel that I wasn’t losing my mind and that how I felt was natural. 

Then Joanne Noakes who is an absolute asset to CAUK made contact with me and spoke to me about everything, offering various forms of support such as telephone support, written support, therapy sessions with the amazing therapist Robyn Hughes. This was for ourselves and our Children. 

 

Our daughter Hannah who was diagnosed with the condition later the following year has suffered terribly from PTSD and severe anxiety ever since her dad was ill and then her own diagnosis made matters even worse. Where we would be without CAUK none of us knows as they are always there for us. To talk to, to give guidance, support, a listening ear, provide therapy sessions, residential visits for caverfamilies to get together in order to make life long friendships with like minded people who understand first hand what one another are going through. 

They also arrange events such as Caverhubs, Caver Centres, meet ups, Christmas Parties, forums, webinars and during lockdown they have been available on the phone, arranged talks, cavermums Zoom catch ups, weekly daytime coffee and catch up on Thursdays, and an online forum with amazing guest speakers. 

Robyn has been providing therapy sessions which Hannah and I have hugely benefited from. A session with her always helps to make us feel so much more positive about things. There’s just something about her, she’s amazing! Sian is also an asset to CAUK and works alongside Jo, together they arrange an action packed Summer and Christmas Residential which we were apart of last year which both were fantastic and also a weekend in April to Portsmouth with an Escape Room Challenge organised by Sian’s husband Scott and daughter Becky. 

At these events the children, teenagers and parents all get together and take part in activities laid on for them, ranging from crafts to sports and a party and movie night. Quizzes and pamper sessions for the adults, bingo, art and crafts and children’s play therapist as well as Robyn are also present at the residential’s offering sessions to all. I could write so very much about this wonderful charity and how they have changed our lives by enabling us to learn about the condition through themselves and members shared experiences. 

We are proud to be a member of CAUK and are eternally grateful for all that they do for us all. We no longer feel alone. In fact we are apart of a wonderful family. Caverfamilies! With lifelong friendships made!

Meet the Family : The Langstaffs

Hi, we are Cara, Mike, Thomas & Elliot the Langstaff/ Nolan family.

Elliot had a bad brain stem bleed which lead to a stroke. It was at this time when he spent 3 and a half weeks in hospital.

I was looking for advice I was lost siting by my son’s bed and frightened. And I came upon Cavernoma Alliance UK. Their support during this tough journey has been invaluable.

We have met people going through there own cavernoma journey as well. And have been a great source of support and comfort for each other. We call each other are CaverFamily.