Let’s get to know the super mum
Karina is a 35 year old mum of two. Freddie is 14 and Paige is 3. She’s a mobile beautician who qualified 2 years ago to work around her children and Freddie’s needs. Freddie was diagnosed with Sturge Weber Syndrome which includes drug resistant epilepsy, glaucoma and a port wine stain birthmark. He has also been diagnosed with ASD and ADHD, as well as global development delay. On a day to day basis things can be tough for Karina and her family. They are currently navigating through teenage mood swings and puberty as well as her own diagnosis of PMDD, so there are a lot of hormones, emotions and mood swings lingering around their household.
The Journey of Freddie’s Disability
We asked Karina “What was your journey like when you first found out about Freddie’s disability?” and her response has made us feel incredibly proud of how she’s dealt with the journey so far. She answered “I was actually a single Mum to Freddie when I first found out about Freddie’s disability and diagnosis, Freddie was 12 weeks old when the SWS was confirmed and we were referred to Addenbrookes Hospital and then Great Ormond Street Hospital. I was navigating how to be a first time mum, as well as a single mum with no co-parent involved, as well as then having to deal with the Sturge Weber Syndrome which is obviously extremely rare so not easy to find information out about”.
Karina was in denial at first, because Freddie was hitting all of his milestones and nothing was showing any signs of seizures or delays, so Karina just assumed everything would be okay. Then one day, when Freddie was about 9 months old… he had his first seizure. Karina said “to be honest it was horrendous, I walked in to find my baby unresponsive and barely breathing, so he was blue lighted to hospital and he was in the high dependency unit for 18 days trying to get medication into him to stop the seizures. It was just a really difficult time. I remember spending my first Mother’s Day in hospital and being so happy I managed to get him out of bed and just have a cuddle with him”.
Navigating The Early days
Karina was really lucky to have some fantastic support from family and friends so she never felt like she was stuck or alone. Her Mum and Step Dad would help with taking Freddie to hospital appointments, and they joined Karina to the first appointment at Addenbrookes so she wasn’t there to deal with it by herself. When Freddie had his first couple of eye surgeries for the glaucoma, her Step Dad went with her and stayed with her the whole time. Her Mum would stay with her through the night for extra support, or Karina would go to her Mums house with Freddie as they live around an hour away from where Karina lives. Her parents helped with finding Great Ormond Street and they went to the first couple of appointments there with Karina and Freddie which again, took a little bit of weight off of Karina’s shoulders.
“I think that although for the first couple of years although I was a single mum, I had a lot of support, and even my friends were like family to us”.
We asked Karina “How did you navigate those early days emotionally and practically?” and Karina replied “I always felt like I had the big extra family network. I think emotionally it was obviously more difficult trying to figure out what was going on in my head, as well as be strong for Freddie. I had already been diagnosed with postnatal depression early on, and anxiety a couple of years before I had actually had him, so it was tough but I think, it was just a case of focusing more on him than me.”
The challenges
One of the biggest challenges Karina has faced as a parent so far is the fact that Freddie has been intubated twice now, (which is being put into an induced coma). Having to deal with that, but also be there for Freddie at the same time has been extremely tough to balance, and many parents would never understand how heart-breaking this can be.
Karina said “I actually think the hardest part about everything we deal with is the self doubt. I am constantly worrying about the way I parent and how I am as a Mother. I am constantly questioning myself and thinking whether I am “exaggerating” and sometimes I feel like I find all of this so hard and tiring, and I’m making it out to be more of a deal than it is. But then I will speak to people and they remind me that I am dealing with a lot, and that what Freddie is going through is not what a typical teenage boy would normally experience”.
“It’s also really hard trying to parent a teenage boy who mentally is only about 5-6 years old. You have this tall, gangly, really strong and loud boy who appears to understand what you’re talking about, but actually needs the typical parenting that you would use with a much younger child – it’s hard to remember that sometimes”.
The Unexpected and Beautiful parts of the journey
The bond between Karina and Freddie is fantastic. Apparently, he is a complete Mummy’s boy! He has taught Karina how to be a Mum, and they did 3-4 years where it was just the two of them against the world. Freddie has taught Karina a completely different kind of strength that she didn’t even know existed. From the age of 7 months old, Freddie has been in and out of hospital for eye operations, MRI scans under general anaesthetic, laser treatment, going back and forth to London for incredibly long days at hospital for huge multidisciplinary assessments, and he doesn’t bat an eye lid. He just gets up and gets on with it. What an absolute trooper!
“In February 2026, Freddie had a really serious episode of seizures and had been intubated for 36 hours. When he woke up, he laughed and joked with the nurses. He’s so polite, he’s kind, and I’m just really proud of him for that.”
Another question we asked Karina was “How has being Freddie’s Mum changed you as a person?“. Her response was open, honest and very powerful which is what we love to encourage here at The Go Girl Society! She said “I mean I’m definitely not afraid to stand my ground anymore, I have gotten into more arguments with doctors and nurses than I ever expected in my life! I will definitely fight for what I think needs to happen. I used to be very “it is what it is” and let people walk all over me, but I am much more determined and extremely protective now, probably more so because of the extra needs. Freddie has had a few nasty things said about him before (by adults!!) and I am absolutely not afraid to shut that down. In the past, if people have been rude or unkind to me, I’ve very much just taken it if you will”.
Misconceptions
When it comes to misconceptions and wanting people to have a better understanding of raising a child with a disability, Karina thinks the majority of people are fine. They might not fully understand but they try to show respect and they sympathise.
However, Karina thinks the main misconception that frustrates her personally is around ASD and ADHD and that “better parenting” is needed. She remembers someone saying how Freddie needed to be able to go and burn his energy off and let all the naughty behaviour out and she stood her ground and commented along the lines of “He’s got ADHD, he’s not naughty”. There is a clear difference between the two, and the majority of people do not understand, and just assume the latter.
In case any of you reading are not aware of what ASD and ADHD is – ASD stands for Autism Spectrum Disorder. It’s a developmental condition that affects how a person communicates, interacts socially and experiences the world. ADHD stands for Attention-Deficit/Hyperactivity Disorder. ADHD is a neurodevelopmental condition that affects attention, impulse control and activity levels. It’s a difference in how the brain regulates attention and executive functions.
Karina said to us “The majority of the time, Freddie is well behaved in public, he probably masks it better than typical boys. He’s just loud and excitable and a little bit in your face so people sometimes take that as being naughty. I just think in this day and age we need to be getting over that”.
Tips from one parent to another
“Karina, what would you say to another parent who has just found out their child has a disability?”
“You got this. Look, it’s going to be hard, it’s going to be scary and worrying and you’re going to doubt yourself, but I honestly believe that the parents of children with disabilities are given them because they are the best parent for that child and vice versa. The children are there to teach you something about yourself, they are there to help you realise a strength that you didn’t know you had, however it doesn’t mean you are alone! Use social media, family, friends, there are so many resources out there to find that support network that is right for you”.
A few ending questions
One of the last questions we asked Karina was “What are you most proud of about Freddie?” It’s so important to show how proud you are of your children, so we couldn’t not ask this question, considering how brave and strong Freddie has been throughout his life.
Karina gave us a lovely answer back, which bought a few tears to our eyes. She responded with “his resilience, his kindness, his personality, the fact he can think of something he wants to build with lego and do it perfectly without instructions! The fact that he deals with so much and gets on with it like a boss. The fact that he is the kindest and sweetest kid you will ever meet, he is the best big Brother to Paige, even when they drive each other up the wall and he loves everyone fiercely”.
And the ending question and the answer we got with it was again, very powerful and inspiring!
“Is there anything you’d like people to take away from this?” “You never know what is going on in people’s lives, so be kind. People may look and appear “normal” but there will be stuff going on with everyone that you don’t know about, so always treat people with respect”.
If you are reading this, and know of anyone who is going through something similar to Karina and Freddie – we hope this story has helped and that you can see light at the end of the tunnel. Thank you to Karina, for being such an inspiration and for sharing her story.