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This is a summary of our wonderful son Ralph’s journey so far  written by his mother Natasha upon leaving hospital

“We’re incredibly thankful and delighted to be finally announcing the birth of our beautiful and heroic little boy, Ralph Charles Gibbs. Here is a summary/the epic saga (sorry for the essay!) of our very turbulent journey over the past 8 weeks and our eventual arrival at home today...
Ralph was born on the evening of the 16th of June in BRI. When he was born the midwives noticed a lump on his neck which they wanted to scan and investigate. We stayed in hospital for Ralph to have ultrasound and MRI scans and they discovered that the lump was a benign tumour made of blood vessels. The doctors decided that we needed to be referred to LGI for further investigation and to properly diagnose the condition. We were then discharged but told that the lump could potentially impact on Ralph’s airway and so we had to look out for changes in breathing. Within 24 hours we were back in hospital as the lump has grown considerably, changed colour and Ralph’s breathing had become laboured. The decision was made at this point to intubate him surgically so that they could secure an airway. This procedure was successful but Ralph’s lump had grown hugely and gone purple. The lump had effectively bled into itself and when it did this, it consumed all the platelets in his body making it impossible for the internal bleeding to stop. The doctors at LGI in the paediatric intensive care department (PICU) fought tirelessly that night to keep him alive and regain control of the bleeding. We then had some time of recovery and Ralph went from being fully ventilated, paralysed and sedated to being extubated and breathing for himself. During this time it was discovered that his lump was a kaposiform hemangioendothelioma, an incredibly rare malformation of blood vessels. There are so few cases of this condition globally never mind locally and so LGI began work with Great Ormond Street and Boston Children’s hospital to decide how best to treat it. We then had a major setback. Ralph’s lump bled again and this time it bled into his airway. This meant we had to watch our baby stop breathing, go blue, and be rushed into surgery. This time the bleeding was worse making it very challenging to secure the airway. Furthermore they struggled to get blood back into his body to help with the internal bleeding so had to inject it via large needles into the bones in his leg. The doctors told us we had to take each hour as it came and just hope for the best. It is terrifying how close he came yet again. However, our little fighter kept battling through despite all the odds and came through this set back. Ralph was at this point re-intubated and again went through a spell of being paralysed and sedated back on the ventilator. 
From that point Ralph started on some medication which the doctors hope will eventually reduce the lump and stop it impacting on his airway. It is experimental but has some good success rates in various case studies around the world. We were told at this point that the medication may take up to a year to work and so we had to think of ways to help secure his airway during this time, especially given that it was not feasible to keep Ralph intubated and on the ventilator (other than the risks of infection, the little terror kept trying to pull out the breathing tube!).
So that is when the decision was made for Ralph to be given a tracheostomy. This involved a small incision being made into his neck to allow a breathing tube to be put in. This is of course not something to be taken lightly, it comes with its own medical risks and we were told this would mean he would need a significant amount of additional care from us with lots of medical training required on our part. We did however feel it was the right move for him and said yes. This also prompted us to be finally moved from PICU to Ward 41, a real step forward for us and Ralph and a sign things were moving in the right direction. This procedure means that Ralph can now breath through this tracheostomy which means his airway is secure regardless of the lump. Furthermore, it is fully reversible and leaves the tiniest of scars, so when the lump has gone or poses less of a risk, the tracheostomy can be removed allowing Ralph to breath through this nose and mouth. 
So then began the process of myself and Paul getting trained up. We have had to learn how to remove and change trachey tubes, how to retape the tube to his neck on a daily basis, how to suction secretions from the tube, how to pass and manage an NG tube (only temporarily in his nose to allow for his medication to be given before it will be given orally) how to administer drugs via an NG tube, and, given how long we had been in hospital, how to actually look after a baby!!!!! 
During this whole time myself and Paul lived at LGI in a facility called Eckersley House. This is a home from home where parents of critically ill children can stay. It is a charity and relies upon donations for it to run. We met a number of parents of children in PICU who also stayed there and I think we could all agree that it was invaluable. Our aim over the next year is to do a number of fundraising events for them to both show our gratitude and to help other families who may unfortunately find themselves in the position we have been in. 
And as for Ralph, during this whole time, although he has lived in hospital, he has continued to be a happy, inquisitive and all round little legend of a boy! He has had his first bath, smile, laugh and poo bomb while in hospital and has basically, against all odds, thrived as any baby would. He has had to battle so hard to stay alive during this time and he is certainly making the most of feeling well and being able to act and behave as any baby should (colic and all 😬). 
And that takes us to today. We have been officially discharged from LGI, Ralph’s name has been removed from the board, and we have been allowed to bring our gorgeous little boy home. The icing on the cake is that before we left we were given the results of Ralph’s latest MRI scan and the lump seems to have dramatically reduced in size showing that the medication seems to be working! We know it is a long road to full recovery but we hope we can now properly start out lives as a family of three. We are eternally grateful for all the doctors and nurses at LGI who have helped us get to this point. Their care has been second to none and they have supported all three of us through this horrendous time. We are also forever indebted to my mum and dad. Without their huge levels of help and support on a daily basis, there is no way myself and Paul would have made it through. And finally we have been really touched by all the help, kind words, gifts and support from our family and friends. We really appreciate it all even if we have been too busy to say it. 
Here’s hoping we continue on our journey of recovery and baby Ralph is not far from being fully fit and healthy.”

It is impossible to express how important to us being given accommodation at the hospital itself for the whole 7 week stay was. We always knew that from leaving the room we could be in PICU or the ward within 5 minutes. We had a direct phone in our room to the bed space in intensive care. Most importantly it enabled us to continue to have the strength to fight for and support Ralph in his most desperate times. The thought that we never would have to leave the hospital without him being well enough to join us became  something that gave us strength. We became part of a twenty roomed community of families who each had their own complex and scary stories as to why their child was very poorly, but were able to support each other in the more challenging days and importantly share news of hope on the better ones. 

 Eckersley House is fully funded through the sick children’s trust and they calculate that £30 will provide accommodation for a family for a night. 

We plan to do a series of events over the next year to raise funds for the charity starting with the incredibly kind gesture from Diana to celebrate her birthday.  

A message from Diana  “An update for you....I've just found out that a certain little man, Ralph Charles Gibbs is finally home. His parents were supported by a charity at LGI and in the circumstances, I want to re-emphasise that I don't want gifts but financial donations will now be donated to Eckersley House at LGI. Hope that's ok with you all. Looking forward to seeing you next Saturday. Xx”

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