MY PART IN THE V.H.L STORY OF #5xVHLWARRIORFAMILY #vhlwarriorfamily
As the Mama.Doo.G.G.Doo of the family, I try my very best to be, the Carer/Family/Friend/Confident/Loved one, to my 5x vhlwarriorfamily members.
My daughter Linzie was 1st diagnosed at 25yrs old, we knew something was wrong & as a mama I kept on at Linzie about having her eye’s checked, due to suffering from severe headaches and as she already wore glasses I thought “eye strain” was an issue for her 😢 but as adult kids do, she struggled on without going for a check-up due to being a busy mother of 2 beautiful kids Jack 5yrs (diagnosed) & Cerys 2yrs(diagnosed) now 3 kids, Arran 5wks (diagnosed). However eventually it got so bad she didn’t get the choice, she was taken to the opticians and the woman called Lesley, sent her straight to her G.P , it was the day before her brother’s Birthday & the G.P told her she had to go straight to hospital in the morning to see an eye doctor…. Linzie wouldn’t go because she didn’t want to remember her brother Jordans Birthday as the day she was given bad news. Linzie knew that something serious was going on however she told her G.P to arrange her “EMERGENCY APPOINTMENT” for the 12th of March so she could have, 1 more day without knowing what was going on and she made me promise NOT to tell Jordan, that anything was going on with her eye’s or the hospital appointment, until she was sure she knew herself !! That is my daughter, the love she has for her brother was more important to her than anything else that a doctor said, my heart was torn 💔 into 2 pieces, 1 for my daughter & 1 because I couldn’t tell my Son, what was going on with his sister, as as single parent my 2 children are my world and we never had secrets, we shared everything my 2 kids & I 💔 ontop of that I was dealing with my own medical issues. So we had a great family night to celebrate 🥳Jordan’s Birthday 🎂 🥳 🎉 the next day, I took Linzie to her hospital appointment thereafter will remain etched in my mind forever, the look on the doctors face, how many opthalmology doctors were coming in and out of the room and Linzie’s smile lighting the room up, as her beautiful blue eye’s filled with tears 😢 it was like watching my daughter being an exhibit at the fair, yet she just beamed her beautiful smiling face to everyone who came to look into her beautiful blue eye’s . It was approx 2 hrs until the diagnosis was given, Linzie has a condition called V.H.L the Doctor explained alot of talking then by the 6/7 hours point, of everything, doctors coming in and looking, eye pictures being taken drops more pictures and then we realised that other people were not getting seen & complaining to the receptionist 🙈🙈
V.H.L was rare with only 1 in every 36,000.00 people having it. OMG don’t read anything online, the first chance I got, I had to look online…. I needed to find out as much as I could so I could be as much help for my daughter as I was when she was small, she’s still my babygirl after all. We left the hospital and went to Jordan’s flat and their between Linzie and myself we muddled through the diagnosis and Linzie told her brother everything & also how he also needed to be tested for VHL thankfully he didn’t carry the gene !! This was the very start of a journey & to date so much more has happened but they have the right to share there own stories and me, well I’m always going to be the one standing beside them and having their back and supporting them along the way forever as long as I’m here because that’s what a Mama.Doo.G.G.Doo, does 👍😘 love yous awe ❤️
