DEAR READER, DONOR OR SITE VISITOR,

YOU MAY WONDER SOMETIMES HOW THINGS ARE GOING FOR DANILO AND WHAT WE DO AND WHAT THE RESULTS ARE FOR HIM AND THAT'S WHY WE'D LIKE TO TALK TO YOU IN THE FORM OF AN INTERVIEW. WE WANT TO INFORM YOU ABOUT DANILO'S DEVELOPMENT USING EIGHT QUESTIONS. HOW IS HE DOING NOW AND WHAT PROGRESS HAVE WE MADE WITH THE TOOLS WE HAVE PURCHASED? BUT ALSO ABOUT ASPECTS SUCH AS WHAT ACTIONS CAN YOU STILL EXPECT FROM THE DANILO FOUNDATION AND IS THERE ALREADY A NEW GOAL? YOU WILL ALSO GET ANSWERS TO QUESTIONS SUCH AS: WHAT ROLE DOES NUTRITION PLAY IN DANILO'S LIFE AND WHAT WOULD HIS LIFE LOOK LIKE IF WE NO LONGER MOVE HIM? YOU WILL ALSO READ HOW MANY PEOPLE ARE WORKING FOR DANILO, SO ON THE MOVE. FINALLY WE'LL TELL YOU SOMETHING ABOUT THE DANILO FOUNDATION. YOU WILL GET AN ANSWER TO ALL THESE QUESTIONS, BUT IF YOU ALSO HAVE ANY QUESTIONS, PLEASE SEND THEM TO INFO@DANILOFOUNDATION.COM.

How is Danilo doing now? 

Danilo's health seems stable, the number of epileptic seizures is fortunately low and his dystonia seems to be under control, with the occasional outburst. Our goal is for Danilo to grow up as a happy boy. Danilo's scoliosis is present but limited, we will explain later why this is the case. Danilo's hips dislocate slowly but steadily, but this can become painful for him over time. Danilo has 'bladder cramps' and has a lot of discomfort when urinating and he also has to urinate relatively often, sometimes more than 20 times a day. Almost every urination is a painful experience for Danilo. Furthermore, Danilo cannot poop like other children, but needs help to defecate. We use the laxative drug pharma glycerin for this, which is not reimbursed by health insurance. This also applies to almost all the diapers that we have to buy for Danilo. According to the health insurance, Danilo is "entitled" to five diapers a day. Danilo consumes no less than 140 diapers per week, so 7,280 diapers per year. Fortunately, the diaper bags that the dirty diapers go in are made available free of charge through the municipality. A number of lovely mothers help us to arrange the bags for Danilo. Every week Willy goes to the waste collection point to hand in all full bags for free. Danilo also produces quite a lot of mucus and sometimes vomits, which means that the number of paper towels cannot be kept up. The quality of these kitchen rolls must be high, so as not to end up with hands full of mucus or vomit every time. About three kitchen rolls are processed every day, which equates to almost 1,100 rolls per year.

What progress have we made with all the aids we have purchased, such as the Innowalk and the Molliipak?

When Danilo was four, he first encountered the Innowalk, which was a prototype at the time, but it had all the functions. Danilo has now had the current Innowalk, which we were able to purchase with the help of a crowdfunding campaign, for three years and he practices with it on average two to three times a week. The movement of the Innowalk promotes blood circulation in Danilo's muscles in his legs and hips and because he is brought upright, this also has a positive effect on his difficult bowel movements. Because Danilo cannot stand himself, the Innowalk is an important tool to help him experience standing. We see no decline in Danilo's condition, so we cannot quantify exactly what percentage he is improving. We know that Danilo will never be able to walk, but we can give him some experience of standing and walking; in his way. The Innowalk will never be able to make him walk. This also does not apply to the Mollii suit, which is a tool to positively control his muscle tension. The suit also has a relaxing effect on his muscles that are often under tension.

What is the money currently being raised through all actions used for, now that there is no longer a clear purpose?

The purchase and use of the Innowalk and the Molliipak means that these aids must be maintained but also have to be purchased again over time. So we are reserving money for this purchase, so that we can continue to provide Danilo with these aids. Because Danilo is growing, the current Innowalk and the Molliipak will become too small over time and a larger model will have to be replaced. This is possible because we always organize a number of actions during the year. But don't you have a new goal to raise money for? It is still difficult to answer yes, because this goal is not yet concrete. We are in contact with the Municipality of Enschede about the purchase of a modified bus to transport Danilo safely, but also to visit or go on holiday with our family. We still transport Danilo in our own car, but this is becoming increasingly difficult for us. Danilo already weighs almost 30 kg, which means that lifting and twisting movements can have fatal consequences for our back. We do not yet have a complete picture of the financing of this bus, so we cannot yet specify a target amount. Part will also be raised through external funds. The adaptation of the bus for Danilo's wheelchair is in principle arranged and reimbursed by the municipality.

What would his life be like if we were no longer able to move him?

At the beginning of Danilo's development we thought he wouldn't be able to live without us, that's right! But we soon discovered that we couldn't do without him either. Ivana couldn't imagine life without this little man snoring at night and she has become so used to Danilo's delicious smacks while eating his favorite dessert. What an angelic face he has.

If we were to stop exercising Danilo, his physical condition would deteriorate rapidly. His hips would dislocate unevenly, which would have an adverse effect on changing his diapers, but would also make dressing and undressing much more difficult. If we were to just let Danilo lie down, his lungs would become more sensitive to inflammation. But other organs will also work less well due to poorer blood flow and may fail. Exercise stimulates his already poor bowel movements a little, so we can still relieve him with relatively simple laxatives. This means we don't have to go to the hospital to give him an enema. Because of everything we do, Danilo ends up in hospital less often. A body that is in good condition has more resistance.

What additional activities do we do in our family to get Danilo in shape/exercise?

Three to four times a year, a physiotherapist from Serbia comes to visit us at our expense (and lodging) and for a period of at least four weeks. She helps us to keep Danilo moving every day through all kinds of exercises that she performs with him. . The intensity with which the exercises are offered gives him a 'condition boost' that limits scoliosis and other forms of physical discomfort, such as contractures and muscle shortening. In our opinion, the intensity of regular physiotherapy (one hour twice a week) is insufficient to keep a child like Danilo in good condition. More physiotherapy is not possible in his current care package. We also swim with Danilo once a week at Roessingh, an activity that is very pleasant for Danilo, because the pool is extra heated, which puts him in a completely relaxed state. His parents too, by the way.

What role does nutrition play in Danilo's life?

Despite his multiple disabilities (such as no head/trunk posture, no motor skills, virtually no vision, no communication), Danilo does have a well-developed sense of smell and taste, which makes eating a pleasant activity for him. Danilo also has a preference for certain dishes and he also knows how to indicate what he absolutely does not like. His favorite dish is veal with carrots and pulled pork with beans and chicken risotto with mozzarella. Combinations with apple sauce or Greek yogurt are a true taste sensation for him, even though everything has to be pureed in a blender. He also prefers sweets, such as number 1: the Pastéis de nata / vanilla custard combination, followed by number 2: stewed pears and 3: raspberries.

We are what we eat, it is sometimes said, or that we feel the way we eat. Eating plays an important role for Danilo, even though it takes him a little longer, about 20 minutes.

How many people are active to care for Danilo and keep him moving?

Danilo is cared for every day by at least two caregivers who come to our home. We employ a total of seven caregivers, Anna, Ine, Asha, Judy and Mirfet. There are also two healthcare providers in training. And of course we are also caregivers/informal caregivers ourselves. We train our healthcare providers ourselves. The caregivers ensure that Danilo does not lack anything, he is constantly cuddled, but of course he also needs to eat, drink, pee, poop and exercise.

They help administer some medications and sometimes help with cooking. They also occasionally bring their own food that we can taste. This way we literally get a taste of various cultures. With all those different languages (because not everyone speaks Dutch yet), mutual communication is a cacophony of sounds, but we always find a solution together. Our cabinet can follow this example 😉.

Danilo does not go to school or a special daycare center. In 2018, Danilo was very ill and we even feared for his life. After a short admission to the MST, he was then admitted to the UMCG in Groningen. He was then taken there with sirens screaming. Along the way the ambulance broke down and a battery had to be replaced, so we as parents arrived in Groningen earlier. After a period in the ICU, he was transferred to the children's ward to recover. He had already lost a few kilos. When we returned from Groningen, we decided that he would be cared for at home. So it is always busy in our house, because the people who care for Danilo also have to eat and drink. We cook every day for these super informal caregivers. A physiotherapist comes twice a week. In addition to the regular check-ups in the pediatric department and neurology department of the MST, Danilo also has to go to the dentist just like any other child. That's quite a situation, because Danilo doesn't open and close his mouth on command. We brush Danilo's teeth every day, but we cannot prevent cavities from developing because Danilo (as we can) does not use his tongue every day to (unconsciously) remove food remains from his teeth.

What does the Danilo Foundation do?

The Danilo Foundation was established on April 16, 2020 and aims to organize or facilitate activities to acquire and manage resources to maintain or improve Danilo's general condition and, if necessary, to provide Danilo with long-term care. to facilitate the future. But the Foundation also aims to acquire resources in this way for other children with multiple disabilities.

The foundation intends to organize a seminar with varying themes every year in collaboration with Roessingh. This took place successfully for the first time in 2023. The seminar for 2024 has now also been planned; April 18, 2024. The target group of these seminars are the parents and caregivers of the children. You can read what is discussed on Danilo's website (www.danilofoundation.com). All promotions are also listed on the website.

In addition to the daily management, we also have an activities committee that generates good income for the Foundation through a number of regular promotions, such as PubQuiz, Happen & Trappen and a Spinning Challenge. We also have a beautiful website created by SPRNKL Creative Company. We also receive the support of a large number of lovely volunteers who care about the Danilo Foundation and are always there for us! Just like all donors who support us financially to achieve our goals!

We would like to thank all these great people! 

Danilo sends you all a big hug!