Story
ποΈ βππππ ππ π£ βππ§ππ£ππ ππ ποΈ β¨
π»πππ π΄ππ πππππ 4 πππππ πππππ π³πππ ππππππππ πππ ππππππ πππ πππ ππππππ πππ πππππ πππππππππ πππππ πππππππ ππ ππππ πππ ππππ. π³πππ πππ πππππ πππ πππ π πππππππ ππππππππ πππ ππππ π ππππ ππππππππ πππ ππππππ ππ π΄ππππ πΊππππ ππ ππ πππ ππππ πππππππππ!
This year, to raise as much money as possible for Cavernoma Alliance UK (CAUK), Luca is taking part in 'Climb for Cavernoma' where he will climb Mount Snowdon, along with other families affected by the disease ποΈπ§
Callum and I will be supporting him on the climb (realistically more support from Callum as I'm pretty sure Luca will be better than me) and we hope to raise as much money as we can for this wonderful charity.
CAUK have provided us with so much support, knowledge and guidance as a family - so much so that Callum and I now volunteer for the charity to support others who have experienced similar. Due to the rarity of Luca's condition, the charity is very small and, as such, all their money is raised through donations and fundraising. It would be incredible if we could raise as much money as possible to support CAUK π€π½π€π½
We appreciate any donation you can make - no matter how small - so that we can raise as much money as possible for this wonderful charity β¨
- - - - - - - - - - - -
ππ¦ππ'π€ ππ₯π π£πͺ π€
Most of you know Luca's story as you have supported us through it. However, for those who don't, please see below.
π¨ πππππππππ ππ πππ π ππ ππ ππππππππ πππππ πππππππ πππ πππ ππ πππππ ππ πππ πππππ πππ /ππ ππππππ ππππ . π¨πππππ π% ππ ππππππ ππ πππ πΌπ² π ππππππ π πππππππππ; πππππππ, ππππ ππ% ππ πππππ ππππππ ππππππππ π ππππππ ππππππππ (ππππ π ππ'π ππππ πππππππ ππππ ππππ πππ). π¨ πππππππ πππππππππ πππππ πππππππ ππ π πππππππππ π§
Like most people, we had never heard of a cavernoma until our world came crashing down around us on May 2nd 2022.
At 8 months old, Luca suffered a stroke due to a brain hemorrhage (caused by what was later diagnosed as a cavernoma). Prior to this, Luca had been the picture of health and happiness.
After spending 11 days on the neuro ward at Leeds Children's, Luca was stable enough to come home and it was hoped that the bleed would reabsorb overtime, enough to produce clearer MRI imaging in 6 weeks time so surgeons could better see what they were dealing with. During this time at home, Luca's behaviours were unpredictable - one minute he could be howling with laughter, and the next he could be crying out in pain. He was having multiple seizures a day, leaving him very tired and agitated. As parents, we knew something wasn't right.
On June 14th 2022, our fears came true at Luca's scheduled MRI scan. Luca's brain had continued to hemorrhage whilst we had been at home and we were told that he required emergency brain surgery to relieve the pressure and remove the blood clot and cavernoma. On June 16th, Luca underwent 8 and a half hours of surgery to save his life. Surgery had gone as planned and the neurosurgeons were confident they had removed as much as they could safely, without causing too much brain damage. After just 8 days recovery, our little hero was allowed to come home! π¦ΈπΎ
We were told by the neurosurgeons that Luca would likely be left with epilepsy and a visual impairement due to the damage sustained to his brain during his stroke and, subsequently, the brain surgery. However, Luca was alive and that's all that mattered! π€
The following year was relatively calm, and we were beginning to find our way as we navigated Lucaβs new disabilities. Sadly, in July 2023, Luca suffered another brain haemorrhage while at nursery and required another craniotomy - something none of us were prepared for. We couldnβt believe we were facing this ordeal all over again. We couldn't believe we were in this position again.
After nearly six hours in surgery, the neurosurgeons told us they had removed four large cavernomas that had βreformedβ since Lucaβs first surgery. Remarkably, despite everything he had been through, superstar Luca was up and walking just a few hours later and was discharged home the very next day π
Since July 2023, Luca has done incredibly well. Weβve had no medical emergencies, which has been a huge and very welcome relief for our family. A small area of cavernoma remains, but it is carefully monitored through his routine MRIs and, for now, there is no cause for concern.
Lucaβs visual impairment cannot be improved; however, with the amazing support around him, he continues to adapt so well. He is able to access school and all of his hobbies and, most importantly, love every moment of them. He attends a brilliant little school and this year has settled into Reception wonderfully. Luca is the happiest, kindest soul we know, and we are incredibly proud of everything he continues to overcome π€
The invisibility of Luca's disability means that it is even harder to raise awareness of his condition, which is why public events such as 'Climb for Cavernoma' are so important.
We don't know what the future will hold for Luca as the behaviour of cavernomas can be so unpredictable. However, we hope to raise as much money as possible for CAUK so they can continue their incredible work, supporting families affected by this rare disease while also funding vital research into potential treatments π¬π§¬