This is the story about Diamanda Holmström, a soon to be 2 year old girl. When Diamanda was just 7 months old, she took her dad Kudo and mom Ulrika to visit her grandparents in Argentina. Shortly after arriving to meet her family, Diamanda got sick, really sick. Their five months of parental leave together with Kudo’s family and hence Diamanda’s grandparents has since then gone from bad to worse. Instead of watching Diamanda play and discover the world and her family – the family’s trip has been filled with the worst kind of worries; a sick child, YOUR sick child. Help Diamanda!
We began discovering that Diamanda had an aggressive form of child epilepsy. She started to lose capacities that she had earlier – for example, she stopped grabbing objects and we gradually started to lose contact with her. The worst of all, though, was that she stopped smiling. Luckily, we got in contact with a fantastic neurologist who seems to have found the right medication for Diamanda. She started to improve and she started to give us small smiles again.
But then her breathing problems started, and they only got worse. She started to cough and had difficulties breathing and she started going in and out of hospital as she sometimes needed oxygen. We had to postpone our trip back to Sweden a first, a second and a third time. The last time she was hospitalized, in May 2012, she only got worse and finally ended up in the intensive care unit with a respirator. And since then, she is still there. In the beginning she was very ill and her state was critical. She got better, but there were several relapses. We spent many long hours at the hospital every day. Diamanda was anesthetized and we got to meet her only three times a day during visiting hours.
Finally her condition started stabilizing and the respirator pressure could be lowered. But since Diamanda could still not breathe without help from the respirator, in the end of July it was decided that she should be tracheotomized – a small tube is inserted in the throat to facilitate breathing (for a period of time). Since then, the situation has been more stable, and her medication dosages have gradually been lowered. Now she is awake and does not have so much medication. The respirator is on a low level – she breathes herself but gets a bit of help from the respirator. That way, her muscles get a chance to get stronger. We get to spend the whole day with her and take turns on the hospital. Lately she seems much stronger – and finally she smiles at us again!
We still do not know when she will be able to breathe without help but we think her chances of improving are much better if we can come home. Our big hope now lies with the Astrid Lindgren Children’s Hospital where a group of doctors are trying to find a solution and where they are ready to receive her at a special unit for children with her needs – a big contrast to the unit where she is now, in a big room with many severely ill children, high risk of infections and a constant noise – a bad environment for a child who is awake.
The problem right now is that neither the travel insurance, home insurance, the Swedish authorities nor the Swedish Embassy can help the family pay for their trip back home. Diamanda has in all received very little
economic support from the Swedish public system.
In the meantime, a transport team from Astrid Lindgren Children’s Hospital in Stockholm is standing by with a special plane to accompany Diamanda back home. The cost of this trip is estimated to around 650 000 SEK/100 000 USD/75 000 EUR. Even though the Swedish Embassy can’t directly pay for their trip back home, they’ve “kindly” offered to grant the family a loan. And even though both of Diamanda’s parents are working, and living at a friends house meaning they have very little expenses, Diamanda needs more help! Relatives, friends and strangers have already contributed, but more is needed to get Diamanda back home.
Ulrika&Kudo: Diamanda is the most precious treasure we have.
If you want to contribute, transfer money to the Swedbank account: (83279) 924713 9901. If you are outside Sweden you’ll also need IBAN: SE2380000832799247139901 and BIC: SWEDSESS. You can also donate via Paypal.
At last, kudos to all media, tweeps, and bloggers that have been covering this story and thus helping the family get more traction and donations.
UPDATE: Fantastic news! Diamanda is coming home: http://www.dn.se/nyheter/sverige/tvaariga-diamanda-flygs-hem
Good luck and see you back in Sweden Diamanda!