It is the worst feeling ever when a mummy is told their child is going to die and there is nothing more that can be done for him.
He is a one in a million child and he deserves to be heard. I want people to realise that having a child is the most precious gift anyone could ask for. Please don’t take it for granted. Nicholas has gone through so much already and is still fighting. He has touched the heart of so many and hopefully with this gogetfunding page he will touch the heart of many more. Nicholas has made me realise it is all about the quality of life rather than quantity. He is the happiest child anyone will ever meet.
This page was originally set up at the beginning of the year to raise money for a radiotherapy treatment they were trialing in America, however, we have recently had some life altering news and this page is to help keep Nicholas alive.
Thank you for spending the time to read Nicholas story, and any donations to give Nicholas the future he deserves will be much appreciated. xx
Any money that is received that is not needed for whatever reason will be donated to Children in Need.
Update at 29/03/2017
Nicholas has been in and out of hospital the last couple of weeks due to chest and breathing problems. He was taken first taken to A & E on 13 March 2017. They done a chest x-ray and discovered that he now has fluid on his lungs, they confirmed he has a small effusion in the left fissure and blunting of CP angles. They didn't believe this was causing the issues with his breathing so prescribed him antibiotics and inhalers to help. 3 more subsequent visits to A & E meant Nicholas had to be admitted into hospital. He was given 2 nebulizers, 2 inhalers, 2 lots of antibiotics and steroids. The doctors didn't believe it was viral or an infection but they treated for that just in case. They done another chest x-ray and ultrasound (as they discovered he was having issues with his Kidneys). They believe the mass in his stomach has grown so have booked a CT scan to examine this properly. They are not too concerned about the fluid on his lungs (even though I am!) as according to studies it needs to be at least 75ml of fluid for it to show up on an x-ray. After his second x-ray they mentioned another blurred area surrounding his heart. As none of the medication worked they are concerned it is an issue with his heart that is causing the breathing and chest problems. Nicholas constantly complains of pain now and I just want answers. We have another review this Friday, a kidney appointment next Tuesday, a cardiology appointment on the 18 April and dermatology on 19 April, that is only a small few of his appointments coming up.
On a more positive note, Boston hospital has now reviewed Nicholas' file and I hope to have some answers soon. we are just waiting for this report to be sent.
What’s Happening Now
There is a lot of history to this little boy, and I understand that not everyone will have the time to read his background so will start by explaining what has happened recently in order to make me fundraise for his life.
We attended a scan to check the mass that was in his stomach. They confirmed it is growing, but in line with him. It has begun to push his Kidney’s aside but they were not too concerned. I asked the sonographer to check his heart for fluid and this is where it got worse. She confirmed there was fluid on his heart. The next week we were booked into an appointment the cardiologist Dr Carter, a full review was done which included an ECG and Echocardiogram. The fluid was still there but it was not a major cause for concern, just something to be monitored, this is known as a pericardial effusion. What Dr Carter found was much worse. The Mass that is in Nicholas’ stomach is affecting the Venous Vessel and restricting the blood flow to his heart. This means that the flow to the heart is not 100% but the heart is still having to work harder in order to give out 100% to the body. His heart on one side is dilated due to it having to pump harder. As it is the mass causing this issue with his heart the only way to sort out the problem is to find a way to reduce the mass or remove it. We met with his professor on 16th November 2016 to discuss what the plan of action is. There is a drug called Sirolimus, however as Nicholas has not shown positive for a gene in the mass they do not have a strong enough case to use it. They must put this forward to the board in order to see if they can put a big enough case forward, which is very unlikely. There is another option, which is to prescribe Sildenafil, otherwise known as Viagra! This is currently prescribed in Stanford California as a trial. These two drugs seem to be his only option of survival, although they may not be offered to him on the NHS. To hear the doctor say, unless we can get funding to try one of these your child is going to die is not easy as a mother. If we continue to wait for the NHS to approve a drug for Nicholas it might be too late.
Nicholas is also due to be reviewed by a Kidney specialist as they believe the blood in his urine could be a sign of Kidney failure.
I do not want to burry my child, it should be the other way around. I will fight as hard as I can to give Nicholas the life he deserves. We do not know how much time we have, all I know is that if this is not sorted out soon he will get progressively worse, and I cannot bear the thought of watching him suffer.
What is the money raised being used for?
A lot of people have asked me what exactly the money will be used for. I apologise that this was not completely clear in the beginning. As the NHS are unable to offer Nicholas the medication he needs at the moment, due to the cost I presume and the fact that they cannot find a strong enough case to support his cause we have looked at the alternative routes.
There is two possible treatments we have been investigating. One is Sirolimus, which is offered at Boston Children’s hospital in America. This is what they currently give here on the NHS to Kidney transplant patients and are currently putting to the Board at the hospital. However, there is little evidence to support that this medication will work.
The second type of medication is Sildenafil which is being trialled in California, America. There has been a lot of research to support this medication in the use of patients with the same conditions as Nicholas. I have briefly spoken to Nicholas’ local doctor and he believes that the negative of this treatment may out way the positives due to the side effects. I believe this is something I want to look a lot more closely into as there is a few studies which support this, one is; http://www.nejm.org/doi/citedby/10.1056/NEJMc11124... if you would like to read further.
We want a second opinion and for treatment to begin. It was over two years ago when they first discovered the mass in his stomach and it has been left ever since as a ‘wait and see’. This approach has clearly not helped my son as his health is deteriorating. While this fundraising is going on I am continuing to research which option would be best for Nicholas, however, we intend to go to America to seek further support. We would like to have an initial consultation with a specialist in America who sees this kind of thing regularly and knows the best treatment going forward. We also intend to use this money to fund his treatment for as long as possible. If a treatment appears to be working I believe they will have enough evidence to continue this treatment on the NHS.
We will not know exactly how much money we need to raise until we have undergone the first consultation in America, this is because we do not know if we will need to stay there for a length of time or if he will be allowed to return home under my supervision.
We do not have a timescale as such for this treatment. We want to get things moving as soon as possible and aim to leave for America as soon as we have enough money. Doctors have not indicated how long we have. We are due to see a Heart Specialist on 13 December 2016 which should hopefully give us some more information.
One thing I would like to add is that the Doctors that have seen Nicholas so far have been amazing. We could not ask for better doctors. However, I know they can only do what they are permitted to do. I do feel it is very sad that there is people in the NHS who are higher up who are so concerned about how much things cost rather than the impact it could have on someone’s life, but, this is not down to the actual Doctors who have been treating him so far.
As mentioned previously, any money that is raised that is not needed for one reason or another will be donated to Children in Need. This is at Nicholas’ request.
I am a mother, a mother who wants the best for their child, for them to be healthy, happy and enjoy the life they have. Nicholas was born at just 32 weeks gestation weighing just 4 pound 3 ounces on the 4th October 2011. His weight rapidly dropped to 3 pound 9. His delivery was rushed as he wasn’t waiting around. He needed oxygen for the first 5 minutes and was then on cpap for a few days. They noticed that Nicholas was swollen on his left hand, arm and genitals, they first put this down to the delivery. About a week later they noticed he was leaking protein in his urine and believed him to have a condition called nephrotic syndrome. I was told this was fatal in prem babies and I needed to say goodbye. Thank goodness this wasn’t the correct diagnoses. He spent 4 weeks in the neonatal unit and finally came home with me on 30th October 2011.
Nicholas still had the swellings but they weren’t too concerned. He also had Chylous asities in his belly which was fluid, this was confirmed with an ultrasound, however it wasn’t causing any problems so would just be monitored.
On December 27th Nicholas fell ill and ended up in hospital with stomach problems. He was referred to a gastroenterologist. It was in February 2012 that he was first seen by this doctor who used a local anesthetic to do a tap into his belly to determine the fluid. This was when he was first diagnosed with Primary intestinal Lymphangiectasia(PIL). This means that his intestines leak fat and protein into the abdomen, causing distention. He was put on a low fat high protein diet. This has not been without its issues as the diet itself makes him very poorly.
When he first received this diagnoses it was hard to come to terms with. As time passed we received referral after referral for different clinics and different hospitals. We are nearing around 20 clinics for Nicholas to date. As time went on Nicholas was diagnosed with more and more medical problems. These included, Hypogammaglobulanemia, this is an immune problem that people suffer when they have PIL, meaning he leaks all the antibodies and his body is unable to fight infections. In order to help with this he has weekly infusions into both legs. He has been doing this for nearly a year and a half and is very brave.
Within the first year of his life he was admitted to hospital over 20 times due to reoccurring chest infections, bugs, rotavirus ect that he was unable to fight off. He also suffers with very bad croup which we sometimes give dexamethasone at home but if continues to suffer he ends up in hospital with nebulizer and adrenaline. Nicholas was put onto an antibiotic on a regular basis, taking it every 10 days. This gradually helped reducing the amount of hospital visits! He also has generalised multisegmental lyphatic dysplasia (lymphedema) which is the swelling on his hand and his genitals. In February 2013 he received surgery to reduce the lymphatic tissue in his genitals, meaning a penile reconstruction and circumcision. This proved to be semi-effective, however it could grow back and continue to be a problem for him as he gets older. As for his hand he had received regular help from the physios with bandaging and Manual Lymph Drainage (MLD). For the last year Nicholas hand has swollen to an uncontrollable size and we have been unable to bandage. He was booked in for Liposuction on his hand in April 2017, however due to some other recent news we know this is now not an option.
Since then life has not stood still and Nicholas has had more battles to face. He was diagnosed with hearing loss caused by constant glue ear. In November 2013 he had surgery to fit grommets and to check his airways at the same time to determine the cause of his croup attacks. It showed his airways were an irregular shape but should sort itself out as he gets older. His grommets were fitted without any complications. However, not long after surgery his ears were extremely sore and bleeding. He was finally readmitted to hospital in April 2014 to have them removed. He was given a hearing aid and his speech has improved dramatically.
In November 2013 Nicholas was diagnosed as having a chromosome deletion of 1q21. At this current time they are unsure how this will affect him, however it is being monitored as can mean difficulties in learning.
In February 2014 Nicholas was sent for an ultrasound to monitor the asities in his stomach. The next day I received a call from one of his doctors who told me the scan showed he had a mass in his abdomen measuring 7cmx7cm. From the scan they were unable to determine what this was. He was booked in for a CT scan the following week and referred to the Royal Marsden in case it was cancerous. The CT scan showed the mass however it was still inconclusive. In March 2014 Nicholas had a biopsy done of the area (after much deliberation between different doctors involved) and it was not cancer!!!
It was confirmed that Nicholas had a lymphangioma which would be covered under his lymphatic problems with his professor. We attended clinic to discuss the plan. I was informed that although it isn’t cancer it is very serious, and in some cases a worse diagnoses as there is so little knowledge. The plan was to have another ultrasound to determine if it has grown anymore. If it has and it was full of fluid there was be non-invasive treatment. However, if it was made up of cells it would mean surgery to remove it.
He went for an ultrasound in May 2014 which showed the lump had grown to 10cmx10cm, a massive 3cm squared in less than 3 months! They also told me it was cells and not fluid! Meaning more surgery!
We attended clinic on the 18th June 2014. Up to this point I had managed to remain positive and calm, however this was an appointment we were all dreading.
The professor had done his research and confirmed Nicholas is one of a kind. He has never seen anyone displaying the same conditions as Nicholas. He also met with the surgeons to discuss surgery, however on closer inspection it showed the mass is in a danger area around a major blood vessel, the Venous Vessel. If Nicholas was to have this surgery it would be more than risky. No surgeon wants to touch him unless it is for a life or death situation. It is very likely he wouldn’t wake from surgery.
November 2015 Nicholas underwent more surgery as he has had blood in his urine for the past 6 months. The scans were inconclusive as was the surgery. To date Nicholas has had 9 surgeries. This is a lot for a 5 year old to take on and understand.
Nicholas inspires me. He is so small but yet can get through so much and still have a smile on his face. I am determined to help him in any way I can.