I'd like to take a minute to tell you the incredible story of a very special and amazing little girl. This is the story of our neighbur Lara. Or as she is referred to by her family and friends "Her Highness Princess Lara the cute." (as I am sure you can see from the photographs shown on this site)
After a model and relatively uneventful pregnancy, if there could ever be such a thing, with no indications of any complications little Lara was born into this world. But tragically happiness and jubilation were all too soon replaced by sadness and confusion as it very quickly became apparent that things with little Lara were not right. Almost immediately after she was born little Lara had to be put on a life support machine and taken away by the doctors for testing.
After intensive examination the extent of Lara's problems sadly became apparent. Indeed so severe was her diagnoses that the doctors gave her no longer than 8 months to live and on the advice of the doctors it was recommended to her parents that Lara's life support machine be turned off:::
:::: Five years on, Princess Lara the Cute is a constant reminder to her parents and those around her alike that the decision her parents made to go against the doctors recommendations and give their precious little girl at least the opportunity to fight for her life has been without question the right one.
Every single day little Lara continues to defy the odds and battle adversities that her doctors felt certain were impossible to overcome. And every single day this perpetual struggle is met by both Lara and her parents head on. The energy, character and passion for life shown by Princess Lara is simply incredible. The love, dedication and sacrifice of her parents is truly humbling. Each day they work together as a team determined to succeed in giving their Princess Lara the best quality of life they possibly can.
But to achieve this is as far from being easy as you can imagine. Lara's condition has been and continues to be very severe. To go into details would take too long but just to give you an idea of what little Lara has to go through, she suffers unexpected violent respiratory attacks. Her scoliosis (curved back) and her Club Feet in combination with her lissencephaly (smooth brain) do not allow her to walk without the necessity of very expensive equipment. The constant dislocation of her wrists and elbows (due to the malrotations) and joint/muscle contractures cause her severe discomfort, mostly when she gets excited and often when she tries to hold something in a normal way or even tries to operate her beloved Glowworm "Wilmy". She also has experienced severe difficulties with her hands and fingers which are crippled and tightly closed. Although through lots of work and extensive massages her parents have mostly managed to get this under control it still causes Lara considerable discomfort and is just another obstacle she has to cope with as part of her daily routine.
All of these things mean that Princess Lara needs constant round the clock attention and assistance. The necessity to have someone physically with her all the time, alone, requires a huge sacrifice from her parents. To make this possible they have had to change jobs and have taken to doing shift work even though this means that there time together as a family is never normally possible.
The type of assistance Lara requires involves a lot of heavy lifting and over the course of time this strain has taken its toll on both her parents. As a result Lara's mum can no longer lift or carry Lara and may shortly have to undergo back surgery to help relieve what has become chronic pains and allow her to continue to care for Lara. Her Dad too is now suffering from similar ailments which makes it increasingly more dificult for him to carry his little princess.
As with normal healthy children Lara is growing constantly so the weight of the lifting and the pressures on her parents become ever greater. However, there is light at the end of the tunnel. Recent advances in technology have meant that equipment in the form of specialists splits have become available. These can be fitted to Lara's legs and provide her with the ability to bare her own weight and start the process of learning to walk. Even before this specialist equipment became available Lara had always been very determined to some day be able to walk, as she has the very same energy as any other healthy child It is simply that her body would just not allow her to realize this ambition. Now for the first time she has the opportunity to experience this sensation and with the aid of her new splints has already started to take her first tentative but miraculous steps and continues to show constant improvement in her mobility. Go for it Lara!!!
The draw back in providing Lara with these amazing pieces of specialist equipment is that they don't come cheaply. And the fact they are only available from only adds to the expenses involved. Lara will need to use these splints for another ten years in order to correct her condition sufficiently to enable her to walk unaided. Lara and her parents will need to return to at least twice each year. Once in order to have new splints fitted and then the next visit after roughly 6 months to have them re-adjusted to take into account her growth over this period. This is likely to cost an estimated Euros 8000 plus a further 4500 Euros which her parents will be losing in wages.
On top of this Lara also undergoes treatment to help limit and reduce the effect the lissencephaly has on her brain. This involves the use of a large medical facility called a Hyperbaric Oxygen Treatment chamber which without further funding she will no longer be able to have access to. And without access to this equipment Lara's condition will steadily deteriorate.
As well as the above Little Lara also has a wish she would like to see come to be. She would desperately love to improve the sound proofing of her parents apartment. Unfortunately she is a very light sleeper and her condition means that once she is awake it is very difficult for her to fall back to sleep. Currently the noise from outside the apartment means that for little Lara to get the quality of sleep she needs is often impossible. If her parents could find the funds to have glass curtains fitted to the terrace it would really help reduce the sound from the noise outside and hopefully mean that Lara could finally have the rest she needs.
It is with Princess Lara's heart breaking but inspirational story in mind that Pilar, Jorge my Dad and myself have decided to try and help raise the funds required to give Lara the assistance she so badly needs and so richly deserves.
For Pilar this will be her first, but hopefully not her last, venture into the crazy and sadistic world of long distance running. Not being a traditionally sporty person by nature Pilar only started running relatively recently and if you had asked her last year that she would be running in a ½ marathons this September I'm sure she would have laughed at this crazy notion. Nevertheless, after intensive training and many hours hitting the roads and the treadmills at her gym Pilar finds herself in exactly that situation.
If you ask her how this came to be she will tell you that the blame lies squarely at the feet of my Dad who, after also only starting distance running at a relatively late stage in life, somehow managed to persuade Pilar, possibly in a moment of weakness or maybe even insanity, to sign up for the run. But despite her initial trepidation Pilar has so far met the challenge head on. And although she is very nervous about the big day itself she is looking forward to overcoming those nerves and completing the race.
As for Jorge, my Dad and myself all of us have had past experience with ½ marathons and are no strangers to the rigors and stress involved in putting ones self through the physical and mental tortures that are part and parcel of running such distances.
Indeed Jorge is a seasoned Tri-athlete and a member of the Mijas Triathlon team, Ironman finisher and a marathon runner and lives for the thrill of pushing himself to the limit. He has crossed the finishing line of marathons in many occasions but this time he has a great motivation of running to raise funds for Princess Lara. I have no doubt he will rise to the occasion and post a very impressive finishing time.
Then there is my Dad, who is amazingly well over half way to achieving his goal of completing 100 marathons. (How crazy is that!!!) A feet made even more impressive when you consider the fact that he only starting running in his 50's. (Even crazier!!!!). A series of injuries have unfortunately stifled his progress over recent months. His current injury of arthritis in one of his feet being the most debilitating to date. But despite not being able to train for a number of weeks and only being able to put on a pair of trainers for the first time yesterday, he still hopes to battle through his own adversity and complete the race in aid of little Lara.
Finally that just leaves me. I would dearly love for us to be able raise the funds required to assist Lara as she continues her daily struggle. The amount of funding required means it is unlikely that this target will be reached on this occasion. Especially with times being as they are currently. However I would encourage all of you who read this to give as generously as you feel you can. Every penny raised will be going directly to Lara and every penny received will be a step closer to realizing this little girls dream.
Fund raising events such as completing the Marbella ½ marathon will continue until the target amount is reached and any donations received between now and then will be very greatly appreciated.
Our thanks go out to you in advance from all of us taking part in the race at the end of this month. We all look forward to completing the event and informing you of how it all went.
Until then take care and, please give what you can.
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