‘We’re looking for answers’ for Conor

A Bealnamulla mother is hopeful that a world-renowned specialist in London will be able to provide much-needed answers for her ill 21-year-old son and improve his quality of life.

A GoFundMe page set up recently to raise funds for Conor Burke's medical care has already raised €5,200, and his mother Lisa could not be more thankful to those who have supported them so far.

Conor was a normal, healthy young man up until the age of 17, but since then he has endured illness, chronic pain, and a constant round of medical appointments.

Initially, he was diagnosed with IgA nephropathy, a type of kidney disease that can hamper your kidneys' ability to filter waste from your blood. Two years later, Conor started suffering from chronic constipation lasting several weeks. Tests later showed that he had a condition called severe anismus, where his pelvic floor muscles would not relax making it impossible for him to go to the toilet.

He later ended up having an ileostomy surgery in the Mater Hospital, Dublin, but a year later his bladder stopped functioning. He then developed hydronephrosis where his urine was flowing back up into his kidney.

His mother says Conor has no sensation of needing to pass urine and so he must self catheterise multiple times daily as a result. Recent tests have shown that Conor has inflammation on his S1 and L5 nerve. He has denervation and membrane instability which results in chronic leg pain, primarily at night, meaning it is very difficult for him to get any sleep.

Despite a myriad of tests, Lisa says doctors in the Mater, who have been brilliant, cannot pinpoint the underlying cause of the bladder, kidney or intestine problems. His neurologist says there was no one in Ireland who can go any further, and they needed a sub-specialist who would know where to look next. That's when they were referred by the Mater consultant to Dr Jalesh Panicker, a Consultant Uro-Neurologist in The National Hospital for Neurology and Neurosurgery, Queen Square in London.

“He wants to bring Conor over for tests (when safe to do so). We want to find out what exactly is going on and if it can be treated,” Lisa says, however, the HSE Treatment Abroad Scheme does not cover sub-specialists or tests. “We're looking for answers, in this instance, it (the scheme) won't cover Conor until the tests are done and there is a treatment,” she explains.

This is the reason why is she so thankful to friend Pauline Gaynor, who set up the GoFundMe page which has already covered the cost of his first Zoom consultation session with Dr Panicker last week and has given them all great hope that he will be able to help Conor find the root of all his difficulties.

“They haven't been able to put the jigsaw pieces together and this is where Dr Panicker comes in, and hopefully, he'll find the underlying cause. Fingers crossed, it is something we can treat and Conor will be able to move forward,” his mother Lisa says, adding that their first consultation with the doctor was positive, and he has set plans in motion for him to see two other specialists before the tests.

“We really don't know what the cost is going to be. When you pay £300 for a Zoom call consultation, I imagine the tests will be expensive. But Dr Paniker is world-renowned,” she stresses, adding that London is now their only option.

“Times are hard for everybody but even people who just shared it (the GoFundMe page) I appreciate it so much. The support has been brilliant,” underlines Lisa, who is mum to four boys ranging from 8 to 21, Conor being her eldest.

“People have donated €5, that means as much to me as €500. Anyone who has made a donation, I'm very grateful and I want them to know I'll be 100% transparent (about what it is spent on), and if there is money left it will be divided between BUMBLEance Children's National Ambulance Service and LauraLynn, the children's hospice. Every penny spent will be accounted for,” says Lisa, who will put up all details and updates on the 'Helping Conor' Facebook page and the GoFundMe page.

Despite all of his medical difficulties, Conor, who is clearly very determined, managed to get a good Leaving Cert in Coláiste Chiaráin and is currently in the third year of International Business and Languages in TU Dublin, formerly DIT. He would like to pursue a Master's and go into teaching in the future.

All his mother wants is to see an improvement in his quality of life and for him to enjoy his youth having missed out on so much already.

“Covid knocked everyone sideways with all the restrictions but it hasn't really made a huge difference for Conor because he wasn't able to do much anyway,” she details starkly. “Just to go into town for two hours would tire him out. He could sleep for six hours after,” Lisa points out. In spite of that, they remain optimistic.

“Someone up there is praying for us and putting us in the right direction. I want to thank Pauline (Gaynor) who is a friend of the family, who set up the GoFundMe page. Conor is very appreciative of what she's doing. My own family has also been hugely supportive too. I also want to thank Dr Mark McCormick, he's had Conor's back and he's been very supportive.”

To donate, go to https://www.gofundme.com/f/help-conor-get-medical-intervention