Jacks twin sister Heather is doing a sky-dive to help raise money for Lacey’s sensory equiptment and private physiotherapy sessions.

As some of you are away Lacey was born with a few anomalies which included the heart,brain and her spine. She had a large hole in her heart, a smaller hole in her heart and a vascular ring. She has a rare brain condition and an arachnoid cyst in her brain and has multiple anomalies in her spine and ribs. At 3 months old Lacey got really poorly and went into heart failure. We was at her regular cardiology appointment having an echo done when her consultant said we can’t send you home as her oxygen levels were to low. At this point we didn’t know what was round the corner. We spent a month in Evelina children’s hospital getting her better and stronger ready for open heart surgery. When she turned 4 months old she was finally strong enough. After a discussion with the surgeon Lacey was finally given the go ahead for her surgery. Surgery took 7 hours and they was finally able to close the 2 holes in her heart and the vascular ring she had. After the surgery they thought everything went well until an echo showed she had a mitral valve leak. After being on heart medication for a little while the leak finally stopped. But a recent echo done in September 2025 showed she now has 2 more valve leaks with plans to just monitor for now unless she shows signs of heart failure again. Lacey was born with an arachnoid cyst in her brain and half way through 2025 Lacey was having her normal routine mri done and they found the cyst was putting significant pressure on her cerebellum and brainstem. We had a very upsetting call with her consultant from GOSH who said if we didn’t act now and do brain surgery to drain the cyst then Lacey could end up with irreversible brain damage. So we was sent to GOSH and in June she had her brain surgery to reduce the size of the cyst and release some of the pressure it was putting on part of the brain. After brain surgery Lacey had a seizure which lasted over 5mins and she was then put on seizure medication. Since the surgery she has developed a squint in her eyes. During all this they finally confirmed that Lacey had a rare brain condition called Rhombencephalosynapsis which is where part of her cerebellum is fused. This causes poor balance and co-ordination issues, server development delays, motor impairment which causes low muscle tone, cognitive and behaviour issues, ataxia and abnormal eye movements, head shaking. This brain condition has caused Lacey to be developmental delayed and have poor motor skills. She cannot weight bare on her legs and gets around by bum shuffling. She has recently started showing signs of autism and the health care professionals she is under have advised doing a sensory room for Lacey and getting some equipment as well as trying to do private physio to help her gain the muscle tone in her legs to be able to stand and eventually walk. She also has hemevertabrea with spinal scoliosis and 2 fused ribs and is being monitored under GOSH to see if she will need a back brace when she grows up or surgery.

Any money that is raised will go towards sensory equipment and private physiotherapy sessions as she only has one every 6 weeks with the nhs which isn’t enough to help her gain the muscle strength she needs to be able to stand. The private physiotherapy will make such a massive impact for her and hopefully give her the strength and confidence she needs.

Thank you for reading Lacey’s story. We have a long road ahead of us which is likely to include more surgery’s and more tests. But Lacey is such a strong little girl andw does everything with a smile on her face.