Dementia strikes children too
Matilda had a speech delay, her behaviour began changing, and when she developed seizures at the age of three, the doctors diagnosed Matilda with epilepsy. Mel knew that there was “something else underlying”, but quickly and repeatedly found that there was no one willing to listen.
“Nobody believed me that that there was something seriously wrong with my child. It took 18 months to get the genetic testing I’d been asking and asking for.”
After the necessary tests were finally carried out, Mel received the devastating diagnosis in November 2013, that Matilda was terminally ill. “She would not live, and I was told to take her home and make her comfortable”, Mel recalls.
Mel’s life has “changed dramatically since the diagnosis”. As a single parent, she has struggled with what she calls a ‘minefield’ of getting the right treatment for Matilda, and found that the support available for families dealing with childhood dementia was inadequate.
For Mel, the greatest challenge has been to watch Matilda’s deterioration without being able to do anything to stop it. Matilda is slowly losing her ability to walk, to talk, to feed herself, and she will eventually go blind. Mel fondly remembers how Matilda’s life used to be, before the heart-breaking diagnosis, when “she was happy, giggling all the time, and such an affectionate little girl.”
“She was talking, smiling, into everything. She could eat. She had a normal life. I’d do anything to get that back, but unfortunately it’s not to be.”
Throughout all the difficulty and pain, Mel told us the thought that keeps her going is that “my little girl needs me.” With just the two of them at home, Matilda relies on her mum for everything. Mel has had to struggle not only in getting the right diagnosis for Matilda, but in getting the necessary support and care.
“You shouldn’t have to be fighting to get the syringes, or the right medication. You just get lost and you have to fight constantly to get things put in place.”
Going forward, Mel wishes there were more efficient administrative services regarding rare diseases. Testing should happen earlier for illnesses like childhood dementia, and medical professionals need greater awareness of the services available, so they can provide better advice and support to affected parents.
“I struggle with reading and writing, and I have to rely on the professionals to help me write all the paperwork and go through it. I break down and cry every time, just trying to get things put in place for my child.”
Having her opinion ignored led to delayed diagnosis and treatment for Matilda, and Mel is now determined to making sure that her voice is heard, and change to the system is brought about.