Sully's Transplant
On behalf of the sweetest kid alive, Sully, we’d like to raise funds to cover the maintenance expenses that will be incurred during his Bone Marrow Transplant, which is scheduled for February 2022, which is the only cure for his Chronic Granulomatous Disease.
Chronic Granulomatous Disease (CGD) is a rare, X-linked genetic condition which affects Sully’s white blood cells (white blood cells are unable to protect the body from potentially harmful microbes. These can cause serious infections in the internal organs.), which means he is more susceptible and more severely affected by bacterial and fungal infections. Over time this can be life threatening to him. We are so lucky to have had two 100% matches for Sully's Bone Marrow Transplant.
A Bone Marrow Transplant in itself is a large undertaking, which will require Sully to be in full isolation in hospital for at least 3 months. As Sul is rebuilding his immune system, he needs to steer clear of any infections, which means he cannot use any of his current toys, clothes or other possessions for risk of contamination during this time. A BMT also adds additional expenses to Aleks, who will be his primary caregiver while in isolation, but isn't funded by the NHS. This also means new clothes, carefully packaged food is required and will suffer loss of income for during this time.
We would be very grateful for any donation that can help support our family through this process, but if you you’re not able to donate, we still want to use this opportunity to raise awareness to CGD (www.cgdsociety.org) and urge you all to consider registering to become a Stem Cell or Bone Marrow donor via Anthony Nolan (https://www.anthonynolan.org/) or DKMS (https://www.dkms.org.uk/), especially if you are a Male between the age of 18-30 or a Male or Female of Black, Asian or other minority ethnicity, as these are most needed by others.
Thanks, Izzy
Sully’s story, written by his Mum, Aleks:
In my 22 years of existence I never thought I would make a post like this.
Sullivan is a bubbly, energetic 13 month old baby, full of life and love. In April 21 Sullivan was hospitalised for 3 months, due to reoccurring abscesses that needed to be drained immediately. By the time Sullivan was 6 months old he already underwent 4 surgeries to remove these abscesses. Currently Sully has had 9 abscesses. The doctors didn’t understand why this kept on happening to such a happy healthy otherwise baby. At first we was told that there’s a possibility that Sullivan has lymphoma (this is a cancer). Sullivan had different doctors check him, ask the same questions, they had big meetings about Sullivan trying to figure out what this could be. Eventually the local hospital decided they needed help and contacted Southampton hospital and Great Ormond Street hospital.
One doctor decided it was best to take a specific blood test that not everyone thinks of because it’s so rare.
On the 19th of May 2021 Sullivan was diagnosed with CGD (chronic granulomatous disease). Which is a genetic condition that has been passed down by me (mother) but we did not know about it. Sullivan is 1 in 200,000 to get this condition. CGD is a condition that is carried by a female but she does not get sick, but a boy who has CGD is sick. This hidden illness means that Sullivan’s white blood cells do not work and can’t fight off infection and the only cure is a bone marrow transplant. Currently Sully is on two life-long medications to try keep him from getting infections. To us as a family this means we can no longer have children spontaneously like we did Sullivan, only through IVF.
On the 13th of July Sullivan got the news that he has 4 100% matches for a transplant. Which he will be undergoing in February 22 which is why your help is needed.
The transplant itself is funded by the NHS, due to me having a baby I can not work and now and due to Sullivan’s condition I am a full time caregiver. Sullivan’s dad had to leave his job due his son being rushed in and out of hospital constantly, due to the stress, due to not knowing what is wrong with his baby. There are a lot of expenses that will need to be made, such as petrol to and from the hospital, Sullivan’s food is funded but mine isn’t and Sullivan is looking at being admitted for 3 months maybe even more if it doesn’t go to plan. Meaning I will need to get breakfast, lunch and dinner daily. Before going in to the hospital new bottles will need to be brought, a new steriliser, clothing for Sullivan (he is a growing baby and during the hospital admission needs to be changed a minimum of 2 times), toiletries need to be new due to bacteria growing on or in them. Sullivan’s toys must be brand new. All of these things have to be gotten because as soon as Sullivan gets admitted he will be extremely vulnerable and his immune system will be wiped out with chemotherapy. The list goes on and there are so many things that need to be bought.
I just want to give you a small preview of what sully had gone through. In the space of 3 months he has had to go under general anaesthesia 5 times. He had over 70 blood tests, where he would scream out in pain. Some blood tests would take over an hour and 20 minutes to do because he had so many tests done that his veins had gotten so tired it was hard to get any blood. By the time all the bloods were collected Sullivan became anaemic because so much blood was taken and had to have a blood transfusion. Sullivan had canulars put in every 8 hours because they would end up failing, there would be times where he would have a canular in his arm and foot. Can you imagine being restricted of your arm and foot and not understanding why? Every time before a surgery Sully would have to fast. He's a baby and doesn’t understand why I’m depriving him of food. In the end Sullivan had to get a picc line in which is a much better canular (sully had to have lots of different antibiotics though a line) which goes in through his arm vein the line was over 40cm long and it was in his vein. The picc line lasted 2 months and then Sullivan got sever eczema on his arm because it couldn’t get washed, the skin couldn’t breathe because it was constantly under a bandage.
we had district nurses coming in to our home to administer his antibiotics through his line. So even home life wasn’t home life.
At the end of December, Sully will need to have a feeding tube put in, because we can't risk him not eating. The feeding tube could possibly stay in up to a year. After the transplant, Sully will be on 16 new medications daily, which will be administered through the feeding tube. Sully will also be getting a double Hickman Line inserted into his chest for the chemotherapy he will receive as well as the transplant itself.
Our life has turned upside down completely from having a baby and enjoying time with him as he's growing and developing and finding out new things it all had to stop. Sullivan spent 3 of his monthly milestones at the hospital which doesn’t seem like a big deal, but it meant everything to us. Because that… that was us celebrating his life. Celebrating that he made it that far, celebrating anything we could because our life became harder than it ever was.
I would never wish this on anyone, you always hear stories about all these type of things happening but you never imagine it to be your own child, and it happened to me and it could happen to anyone. I never in a million years thought that this would happen to my son. But it has and we are trying to get through it. The amount of guilt I felt when I found out. The depression that hit me was unbelievable. I in my own mind was convinced that I did this to my son, I wanted to die. Honestly I wanted to take my own life on several occasions but I could never think of leaving him especially after what I have given him and what I put him through. I now, after the support of my family, don’t think that way most of the time and think of it as I never knew and I didn’t do this intentionally. The guilt is still there but I’m working through it with the help of therapy and being with my family.
This is me asking for your help, to help support me and most importantly my beautiful baby boy. Thank you for taking the time to read this, even a single share will help tremendously.
