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Louisa Regan

Attempting the London Marathon

Challenge complete

Fundraising for this challenge has ended so we're no longer accepting donations. Thanks to everyone who supported this challenge.

Total raised so far £0.00

Target £0.00

Total plus Gift Aid: £0.00

Raised offline: £0.00

My story

[p]In a moment of madness last year I decided to enter the ballot for the London Marathon. It was the first time I had ever entered, so you can imagine my surprise when I found I had been successful in getting one of the elusive ballot places. I was excitied, but nervous too... how am I going to get from 5k to 26.2miles in 4mths?! Well let’s see on the 22nd April!!! In order to motivate me I have decided to raise some money for charity, and when I came to choosing a charity there was only ever going to be one... Max Appeal.[/p][p]On Thursday 19th September 2013, 3 weeks early, weighing 5lb 13oz my niece Lucia arrived. Philippa and Steve (her parents) noticed that she wasn't reaching some major milestones quite early on so she was monitored by different health professionals from being a few weeks old.[/p][p]In the June of 2014, at 9 months old, she started having clonic-tonic seizures and was diagnosed with epilepsy. She spent 2 weeks in and out of hospital with a variety of different scans and tests being done to her. Lucia took it all in her stride though, she was happy and smiley, winning all the doctors and nurses over that she met with.[/p][p]One of her blood tests had shown a genetic disorder called 22q11 deletion syndrome. It felt to Philippa and Steve at this moment that their whole world changed. They didn't know what to think or feel as they, like me, had never heard of of the condition. During this time Max Appeal was mentioned. Philippa and Steve, as well as other family members including me, registered with Max Appeal almost straight away and joined a support network online, the support and advice that we have received through these pages has been invaluable.[/p][p]Soon after her diagnosis, she again had to have many more tests. It was a difficult time, but thankfully the results came back and showed she has none of the life threatening symptoms; her heart and kidneys are fine and her immunity, although slightly low is not majorly impaired - she still picks up the bugs and viruses like every other child it just seems to take her that little bit longer to shift them! Lucia is off her medication for epilepsy now and will hopefully be classed ‘seizure free’ in the next few months.[/p][p]She does have problems with her eyes, divergent squints in both eyes means she only uses one eye at a time resulting in 2D vision. Everything Lucia sees is in 2D and always will be, she has no perception of depth and struggles in unfamiliar places as she will not see steps or change in surface as we see them. She will need surgery on both eyes at a later date, and regularly attends the eye hospital in Manchester to make sure her sight is developing correctly. [/p][p]She also has low tone, meaning her muscles are over flexible so it was harder for her to learn to walk, however our little trooper mastered this at about 22 months, after monthly Physio and weekly hydro therapy. She quite happily stomps most places now but does tire quite quickly, as her little body needs to do extra work to move her looser muscles. [/p][p]Due to her low tone she also has a few problems with her palate and has monthly appointments with speech and language as well as being seen by a palate team. Although she is doing amazingly with her speech, she is severely delayed in terms of this and continues to have one to one help every few months to help bring her on. [/p][p]Other symptoms of 22q are Glue Ear and recurrent ear infections. Lucia struggles a lot with these and has to be seen regularly by ENT and have regular hearing tests. [/p][p]Although she has had global development delay and was quite obviously delayed a couple years when she was younger, she is coming along in leaps and bounds and we are so proud of her! [/p][p]However 22q is a syndrome, and how she will be effected over the coming years we don’t know.[/p][p]Over the last 4 years the Max Appeal support page has been a god send to Philippa and Steve, they can vent with people who understand completely how they feel and there is always someone there to lend an ear or offer advice when needed!![/p][p]Lucia is adored by everyone that meets her, she's such a happy little girl and an absolute delight to be around. She is a little social butterfly and is at her happiest when she is playing with her big brother, cousins and friends! She is strong willed, a determined fighter, a real force to reckon with, something that we hope will help in the future! [/p][p]We couldn't be prouder of her and truly wouldn't have her any other way, her 22q just makes her Lucia to us. We just want her to grow up not having to explain herself or 22q to anyone and the only way we can do that is by raising awareness. [/p][p]Thanks to Max Appeal many family members feel fully equipped to help her as she grows, now we have a better understanding. If there are any areas we are unsure of, we know where we can ask about it! They really have been the biggest support to Philippa, Steve, Lucia and our family. [/p][p]So any donation, big or small, will go to a very deserving charity. [/p][p][br][/p]

Share Louisa's story



Tracey Hennighan

Well done Louisa, thank you. I am a 22q mum

£10.00 plus £2.50 Gift Aid



Great effort, good luck xx

£26.00 plus £6.50 Gift Aid


Holly Leahy

Go Louisa!! Xxx

£10.00 plus £2.50 Gift Aid


Barbara and Allan

LK1, You CAN do this for LK2!!! Biggest thanks from Lucia’s Grandma and “Grumpa”. xxxxxxx

£50.00 plus £12.50 Gift Aid