Support for 6 year old leukemia patient Marija

This is Marija Magdalena.  She is six years old and loves rabbits, Peppa Pig and pizza.

In April this year at the age of 5 she was diagnosed a rare genetic disorder affecting only 100 people in the world, Schimke immuno-osseous dysplasia SIOD.  Following six months of treatment that wiped out her immune system, in October her parents were also told that she now had Acute Lymphoblastic Leukaemia.  She is the only child in the world currently fighting both these terrible diseases at once.

Marija is currently in intensive care in Great Ormond Street hospital having being transferred as an emergency from her home country of Croatia just two weeks ago.

I met her and her parents Kristina and Zoran, through the wonderful person that looks after our baby girl, Josipa.  Josipa was the only person that they knew when they arrived in London with just one suitcase, no coats and thinking of nothing but their little girl.  Marijas parents have nowhere to live whilst doctors undertake what they expect to be six months of initial treatment and intense chemotherapy. Her mum is currently sleeping at her bedside and her dad is staying in a nearby hostel in a room with ten strangers.

This fundraiser is to help with rent and simple living expenses to take some of the burden off them so they can concentrate on their daughter.  We would like to find them a small, clean flat within walking distance of the hospital where they can rest, cook a meal and take a shower.  Plus help with organising a food delivery so they can cook nutritious meals for Marija when she is well enough.

You can read more detail about Marijas story and medical prognosis in her mums words below. 

Before I sign off her though I’d like you to also know that Marijas struggle is not the first one that she has faced in her short life.  She spent her first three years in a children’s home before her parents adopted after her mum met her whilst volunteering at the home.  Her parents are the kindest, gentlest and bravest souls and describe the last three years that they spent with Marija as “indescribable joy”.  She is their only child after they tried for 15 years to have their own baby.

Please help me to support them. 

Give what you can whatever it is and I promise it will be well spent.  I’ll be updating this with her hopeful progress and story.

Any monies unspent will be donated to The Children's Cancer and Leukaemia Group.

Thank you so much,
Suzann 

——-



This is her story from her parents:


Dear all,

We are parents of a six-year old daughter and we come from the Republic of Croatia.

We have taken Marija Magdalena to London for complicated Schimke immuno-osseous dysplasia SIOD.  It is a rare disease associated with a DNA processing disorder and the mutation and only 100 children worldwide suffer from this syndrome and very little is known about the symptoms and treatment.

Our story started like this.

We adopted Marija Magdalena three years ago. She was a gorgeous, completely healthy, cheerful and stubborn girl who filled our lives with indescribable joy. We were waiting for her for 15 years of our marriage.

In April 2019, the first symptoms appeared, her face got swollen overnight, mainly the area around eyes and the both legs. She was immediately hospitalised in Zagreb hospital and was diagnosed with kidney disease. She was treated with standard protocol therapy, steroids, which she did not respond to at all. Doctors then began to suspect that it might be a genetic disease. Marija's endocrinologist studied her short stature, weak hair, skeletal dysplasia and suggested that genetic analysis be done, which we did in the USA. The finding showed severe incurable SIOD syndrome. We were terrified and felt devastated. We spent four months trying to save and preserve her kidneys and consulted experts in Amsterdam. We kept the kidney disease under control with nutrition and many medicines. Unfortunately, however, since SIOD is a disease of the immune system, she received, among other things, immunoglobulin supplementation.

In October her blood count worsened. The doctors decided to perform a bone marrow biopsy. We were again devastated because the result showed that our Marija Magdalene had Acute lymphoblastic leukaemia.

Well, a combination of SIOD and Acute lymphoblastic leukaemia?!?

There is no record that there is a patient with this combination of diagnoses anywhere in the world.

Marija Magdalena is the first who suffers from SIOD in the Republic of Croatia. My husband and I spoke to doctors in Zagreb regarding the treatment protocol for very rare disease (SIOD) and leukaemia. Since doctors have no experience in treating the combination of these diagnoses, they could not give us good prospects for survival of our daughter.

Then we started searching for a clinic and physicians who have experience with patients suffering from SIOD and of course other specialists, nephrologists, haema-oncologists  who could cope with these diagnoses and potential complications during the treatment.

Within 48 hours we prepared all the documents, packed some basic stuff, took some money, arrived in London and put the child in hospital.

Marija Magdalena started receiving chemotherapy immediately, which is difficult for her already diseased kidneys. Haemodialysis was to be introduced. Various tests, invasive procedures under general anaesthesia, special nutrition, therapy ... have become part of our daily routine.  It's a struggle every day.

Besides, we do not have accommodation near the hospital where we can rest, cook a well-known and favourite meal for our child, because in addition to the foregoing, she has the additional problem of adjusting to food in a new country she is not used to.

While I spend time with Marija in hospital, the only accommodation my husband found is in hostels. After the day spent with a seriously ill child in a foreign city, the only thing which you would like to avoid anyhow is to sleep in a room with 10 different strangers. All this is additionally exhausting, and we must save our strength for our Marija Magdalena.

What we need is a small clean flat where we can cook her favourite meal for our Marija Magdalena, play with her favourite toys… in short where we can provide her temporary home. We hope and trust in God if everything goes well during the long-term treatment, Marija Magdalena will be able to continue her treatment in the day hospital where she will receive therapy and dialysis.

Thank you from the bottom of our heart and God bless you

Harhaj Family