Weʼre raising £18,000 to for adaptions to Lillie's home and for medical equipment
- Cheshire, United Kingdom
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On 14th July 2014, my friends little girl Lillie Mellor was born with a cardiac condition called tetralogy of fallot. Tetralogy means fourfold, therefore, meaning that unfortunately Lillie doesn’t suffer from 1 heart defect but 4. These 4 defects are: pulmonary stenosis (narrowing of the pulmonary valve), ventricular septal defect (a hole in the heart wall between the ventricles), and over-riding aorta (allows deoxygenated blood pumped directly into it) and right ventricular hypertrophy (the right ventricle is thickened and forces blood into the pulmonary artery).
During the first 7 months of Lillie’s life she did really well and made some good progression, however, this was short lived when in March 2015 Lille had to undergo her planned cardiac repair, which was an attempt to correct her condition of tetralogy of fallot and close the hole in the heart. During theatre they successfully closed the largest hole, which was causing the most problems, however, they were unsuccessful in closing the other multiple holes, as they were too difficult to reach.
Therefore, this particular operation led to bigger problems, during theatre there were many complications and they were unable to bypass her heart, resulting in Lillie being placed on an ECMO machine, which helped to circulate the blood and oxygen throughout her body. During this time she was in intensive care and unresponsive, using machines to keep her alive. Due to this, Lillie developed a post-operative kidney injury leaving her with chronic kidney disease; post-op neurological injures; liver failure resulting in her requiring TPN; an artificial food (TPN is no longer required). As well as this, during this time Lillie contracted the deadly disease sepsis, along with many other serious infections. With already having a life threatening condition with tetralogy of fallot it was very unclear as to the future of such a beautiful little girl. Due to her chronic kidney disease she now has to undertake peritoneal dialysis on a daily basis at her home throughout the night (10-12 hours) to work her kidneys for her.
The next few months were touch and go; she was in and out of surgery, on a range of medication to attempt to treat the infections she had picked up. However, June 2015 saw another operation for Lille as she then contracted endocarditis, a very rare and potentially fatal infection of the inner lining of the heart. In normal cases this could be treated with antibiotics, but unfortunately Lillie had a severe case of this infection and the surgeons had to surgically remove the infection off her heart. This was her 2nd operation on her heart to try and correct this awful condition.
It didn’t and still doesn’t get any easier as in February 2016, at just 19 months old Lille underwent her 3rd heart surgery, where the doctors performed a RV-PA conduit to encourage blood flow to the lungs and a tricuspid valve replacement, this is where they removed her broken valve and replaced it with a new one. This was a very high-risk procedure, the method they used to replace the melody valve had never been performed in the UK before and there was a very small chance of survival on such a poorly little girl and if she did survive the operation, the recovery wasn’t promising. A heart transplant was considered but due to the severity of Lillie’s endocarditis this wasn’t an option. Again, during this critical time the future was very unclear. But, she fought another day and to the amazement of all of the doctors and all of her family our little heart warrior came back fighting stronger than ever.
The next few months Lillie’s family were able to, what they thought start their life at home on the road to recovery. There were frequent visits to the hospital for check-ups and short admissions. However, again this was short-lived in January 2017; Lillie had a severe seizure and bleed on the brain, therefore, she was rushed back into intensive care. In March 2017 she had to undergo brain surgery to put in place a SSF shunt (subgaleal shunt) for her hydrocephalus. She had too much pressure on the brain and the shunt, which is still in place now, helps to relieve the pressure. It was suggested by the surgeons that this is only temporary and will need to last as long as possible due to a more permanent shunt not yet possible. All of Lillie’s problems prevent a more stable and long-term solution. However, our little heart warrior is fighting back every day and proving many people wrong!!
So this bring us to now, October 2017, Lillie, with her family right by her side have spent most of her life in a critical condition, coming through the worst and then being hit with another tragedy and never ever knowing what’s right around the corner. For 3+ years they have been in and out of hospital and all of this is still on-going and will be for the foreseeable future as they will always be in and out of hospital and critical care.
Due to all of the complications throughout her life Lillie has not been able to progress like any other healthy 3 year old and therefore, is not mobile and requires 24/7 support from her parents and family to get around. She can’t support herself and requires medical attention daily, with a feeding tube, specialist seating, bath chair, standing frame and a supportive pram. Unfortunately, she is unable to talk but sure as hell likes to babble away and make sure she is centre of attention when she is in the room. Despite all of this Lillie is a very happy 3-year-old girl who is always smiling, even though she is fighting some very huge battles that are not always visible, with even more battles to come.
As Lillie gets older she is of course going to become bigger and heavier and it is going to become more of a problem with lifting Lillie up and down the stairs, in and out of the bath etc.
After being referred to an occupational therapist via the council, after carrying out many tests and procedures they have strongly recommended that to give Lillie the ultimate support and care that she requires, adaptions need to be made to the family home. This involves widening the doors for her specialist equipment that she requires daily, a ramp for easy access to the outdoors and the biggest of all is an extension on the home for a downstairs bedroom and wet room. There is an also on-going cost of all of the extra equipment Lillie requires including, special beds, medication and other requirements that make her life easier.
There is a grant available for this this, however, with anything this is only part government funded and nothing can begin and no actions can be put into place until we can contribute the remaining cost towards the adaptions. This is going to a long process in itself but with your help we can speed up this process slightly by raising the money for such a beautiful little girl and her extremely strong and supportive family.
Without knowing the family, you would never be able to see or understand what they go through on a daily basis because of the strong exterior that they all portray but underneath all of this, life for them is very difficult and they require all of the support that they can get. They have never asked anybody for anything out of pride, but as a close friend I think it doesn’t seem fair that Lillie should suffer now and even more so in the future due to the lack of funds to provide her with the care and support she requires and deserves.
Thank you for taking the time to read through this. We appreciate any support we can get with this, even if you can’t donate please share Lillie’s story via social media as every little helps. Continue to share as often as you can so we can get the support that Lillie requires She is a complete miracle and she has continuously beaten the odds of survival!
Also, if there are any companies reading this who feel they could support in anyway with fundraising, even if it’s a cake sale in work, a dress-down Friday or you could put a collection box in your workplace please do not hesitate to get in touch. xxx
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- 7 months ago
Stephanie Konca/ Lillie mellor7 months ago
Share this update to help us raise more
Stephanie Konca/ Lillie mellor started crowdfunding
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Aug 10, 2018
Matthew Davies is running in support.
Aug 9, 2018
Good luck Matt/ Tatton 10k
Aug 8, 2018
Good Luck Matt
Marius De Wet
Aug 3, 2018
Best wishes for the run Matt (Tatton 10k). Thanks for doing this for Lillie.
Aug 1, 2018
All the best, Becky Machin at Radbroke xx
Aug 1, 2018
In support of Matt's 10k and obviously Lillie herself
Aug 1, 2018
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About the fundraiser
Stephanie Konca/ Lillie mellor
Cheshire, United Kingdom
As a close friend of lillies family I decided to set this page up to help with the adaptions and equipment she needs to make life more comfortable, hopefully this will take away some of the stress and worries they deal with day to day. Please take the time to read her story x
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