First of all I would like to say a big thank you for visiting our go fund me page! For those of you who don’t know Marcus’ story, I will be explaining down below in quite a lengthy post, so if you have the time please read it so you can understand why we have decided to set up this page and why our goal is so high.
It all started when I was pregnant. At my first gender scan we got told we were having a girl, the next scan they said we were having a boy, so we were in total shock.. the next few scans I had it was a different gender every time we went. I had a more lengthy scan and afterwards we got sat down by a specialist to be told they think our baby could have ambiguous gender (both male and female) but the only way to confirm would be an amniocentesis test. However being so far along in my pregnancy and the risks that came with it we decided together to not go ahead with the test and that we would wait and face any challenges head on together once the time came. Marcus was then born a few weeks later, 3 weeks or so early. He didn’t have the best start to his life and spent 17 days in intensive care. Whilst he was there for other health reasons, they done tests and ultrasounds to confirm his gender and he was in fact completely male and it turnt out that they struggled with seeing his gender because he has a condition called hypospadias and chordee which affects around 1 in 300 boys. Hypospadias is where the opening of their urethra (the tube that carries urine from the bladder to through the penis) is not located at the tip of the penis as it should be and chordee is a condition that causes the penis to be curved mainly downwards. The type Marcus has is called proximal penoscrotal and severe chordee and it’s unfortunately the most challenging variant.
Due the the severity of Marcus’ case he requires 2 stage, possibly 3 stage highly specialised surgeries. There is also a high possibility of other complications such a fistula forming so we have to keep that in mind for any extra surgeries he may well need. (Fingers crossed he doesn’t)
We have had many early starts and long days travelling for appointments to the public children’s hospital in Lisbon and have also been on the waiting list for his first surgery since 11th October 2018 and there was an 180 day maximum waiting time. The maximum waiting time had passed and we still hadn’t heard anything so I tried reaching out to see how much longer we would have to wait. On the 8th July 2019 there was 104 patients on this list before him and on the 18th February 2020 there was still 61 patients ahead of him. When I asked why there was still so many ahead of him they said ‘patients with greater seniority go before him’. We then decided to book an appointment with our family doctor and she put in papers for the operation again with our complaints and expressed how urgent it was for him to get these operations done. On the 24th January 2021 there was now 77 patients on the list ahead of him but we finally got sent a ‘cheque’ to go private with a choice of 3 hospitals to pick from as we had waited so long. We were so happy to finally be getting somewhere, so we picked a hospital and had to wait a good few weeks to been seen. Whilst waiting for our appointment the cheque had run out so we couldn’t even use it as a back up for the other hospitals on the list incase the one we picked fell through. So anyway we travelled over 4 hours to see the specialist doctor for his pre surgery appointment, he checked marcus over and then told us there must have been a mistake whilst yes he does do the operation he needs, he doesn’t do it at this hospital as it doesn’t cater for his needs. So after being in the room 5 minutes we had to travel all the way home being no step closer to finally getting his first operation done. The next day I contacted the public children’s hospital and said it is completely unacceptable and no fault of our own that this has happened to be told we would simply have to go back on the waiting list and just wait to be called and they would pass on my complaint.
These operations Marcus so desperately needs are meant to be done between 6 months and 2 years of age for the highest success rate, healing is more eficiente and they aren’t as aware of the pain and discomfort they have to go through. The later they are done there is high potential for negative impacts on him both anatomically and psychologically. The need for a male to look ‘normal’ can cause serious repercussions so it’s not just needed physically but emotionally too. This condition if not fixed can cause a lot of problems later on in life like sexual dysfunction and effecting his ability to have children in the future.
Marcus is now 3 years old, 4 in September and we were hoping to sign him up for pre school, but the worry we go through with him being ‘different’ to all the other boys his age we would hate to put him in the position to be picked on for it. Over the last year or so he has also been having a lot of sleepless nights and listening to him cry whilst holding himself saying his willy hurts it utterly heart breaking, especially as we know the only way to make him better are these surgeries. All of this obviously also affects his mood and behaviour as he isn’t getting the sleep he needs, so it is not only hard on him but hard on the whole family too.
After many phone calls and emails I managed to find out the name of the other private hospital the specialist surgeon worked at and I was able to speak with him on the phone. He said he is so close to retirement so can’t take him on but he can pass marcus’ case on to the specialist taking over him as she is qualified like him. The only downfall is the costs for just the surgeries can be up to €10,000 for each one plus any medication, hospital stays and travel and accommodation on top of this along with any other appointments Marcus may need.
With being a stay at home mum to Marcus and his 1 year old brother Isaac and relying only on Arrons income (only dole at the moment which is much less than a wage because of COVID) we struggle to make ends meet as it is and live pay cheque to pay cheque. With no idea when Arron will be getting back to work, we knew we would never be able to pay for these surgeries alone. So when I put a status on my Facebook explaining our situation I was shocked with how many messages I had got from people telling us to start up a go fund me page to try help us out so we can go private to get these operations out of the way for Marcus, I was honestly speechless.
Our goal is so high because it’s important for these surgeries to be done by the same specialist surgeon. If we are unable to raise enough money to cover the costs of all appointments, surgeries and after care we unfortunately won’t be able to go private for him at all.
If we are lucky enough to get the amount we need for these operations, we are aiming to get Marcus his first appointment with the new specialist ASAP in hopes we will be able to get the ball rolling and get his first operation done this year!! His second operation will be due around a year after. Hopefully there will be no need for a third stage repair or any complications but even if there was that would be scheduled for the year after the second stage.
Just to make it clear - if we don’t manage to make enough money we need for Marcus to have his operations privately, we will still be in need of part of the money you have all kindly donated to use for medication, travel and accommodation expenses when the time comes for him to go to the public hospital and we would be more than happy to donate whatever money is left to help others out that are in the same position as us or donate it to a hypospadias & chordee charity! (if we manage to raise enough funds and have any left over after his operations we will also donate whatever we have left)
There is no support too small. Even just one share could help us out immensely. Thank you so much for taking the time to read our story. If you have donated we are forever grateful for your kindness and generosity. We really do appreciate every single one of you.
Thank you!! ❤️
for anyone who is interested to know more about marcus’ condition here is a link you can check out!
DoaçõesVer as principais
- Kauan Santiago
- Brid & Larry Rowe
- Emily McLaughlin
- Marco Marques
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