Ivy’s Journey, Stem Cell Transplant warrior.

Hello, we are Selina & Sam who are parents to, a to our very beautiful daughter Ivy Stimpson, who has had constant fight and battle since she was born on 24/06/2019.

Our daughter, was diagnosed with Hyper IGE Syndrome 3 weeks just after birth, this syndrome is an Inherited disease from myself (her mother). I was diagnosed myself at just 2 years old and suffered still to this day. This is not what we want for our Ivy, unfortunately with many complications that have hit the road during Ivy’s life, this has caused life threatening complications on her lung, the more damage Ivy is getting the more serious the condition is becoming, on top of what it already is. Ivy has now got a lot of damaged lung tissue, as-well as pneumothorax, pnematoceles (chronic cyst on the lung). With having these on her lung, it is strongly attacking, specially when infection occurres which is sadly becoming more and more of a regular as her life goes on.

With this being said, every parents worst nightmare, our little girl our little baby, our precious little daughter, has been required to have a stem cell transplant, for Ivy to live a better quality of life, which will give Ivy a new immunity and stronger immunity for her body to be able to cope and fight off any type of infection. The main reason for this is to stop the pneumonia keep coming and causing more damage. This will be life changing for Ivy and without, we don’t like say what the next steps would be.

During the whole process of having stem cell transplant, this requires a lot of preparation, a lot of medication and of course an incredible amount of stay in hospital. As a family we will need to re locate from Leicester, to Newcastle, whilst Ivy goes through chemo in preparation for transplant, as you can imagine this is going to be really tough on us as a family and a HUGE strain to our everyday life, we are having to re locate aswell as keeping our life as normal as possible for our Son Logan, which is also going to be another heartbreak along with the journey, Ivy and Logan are inseparable and with Ivy having to have chemo, this means she will not be able to see her brother for at least 4-6 weeks. Ivy will be in very strict isolation during her chemo and transplant treatment, even when Ivy’s immunity levels start picking up, the restrictions will be extremely strict, with this including us having to stay in Newcastle for 6months as Ivy has to be with the BMT team at Great North Children’s Hospital for this amount of time.

The whole reason we are writing our story is, to share what really does go on with all children that are born with PID (Prime immune deficiency’s) and try to make more awareness as much as we can alongside with our journey, it’s heartbreaking hearing the amount of children are born with these life threatening diseases. Whilst being in Newcastle receiving treatment for our Little Ivy, this means a massive massive financial stress on us as a family, as we know over the course of the year we will see a huge change in our finances with our limited work ability unfortunately the government also doesn’t fund you for the accommodation for us to be able to stay with our daughter as-well as be together as family during this difficult journey, so we figured this would be the best way for anyone who wants to help to be able to help.

We are so appreciative for all of the love and support we have received and cannot thank you all enough. We know it takes a village to raise these tiny humans and an even bigger village to get through a diagnosis and treatment like this. Our hopes are high as we look to the future but we are taking it one day at a time right now.

All our love and thank you to everyone,

Love

Selina, Sam, Ivy & our Logan❤️