Hello I am known by Principe Dinis on facebook and instagram. I was born with the ventricles of the heart in reverse, I have autism, global developmental delay, I don't verbalize what is necessary for my age and I have chronic constipation
Quando inicie a marcha com o apoio de um andarilho
My name is Dinis, I was born on November 2, 2016. Everything was normal for what my breast says, pregnancy without problems and delivery very well, a beautiful delivery. It was only discovered that something was not well after hours, I started to get dark, I didn't cry, I didn't react to the stimulus or I knew how to feed myself. I was transferred to neonatology, I was intubated to be able to be fed and I took oxygen and stayed in an incubator waiting to be evaluated by a pediatrician. The next day the diagnosis arrived, we could expect anything but to tell dads that I was born with the heart's ventricles upside down (congenital transposition of the great vessels) and with a shortening of the aortic canal. The world fell to my popes, nobody expected such news. We questioned everything cardiologist if this diagnosis would interfere with my life and my development, to which I said no, but the truth and that there were many setbacks along the way, at 4 months did not smile did not react did not hold the head did not have strength in the limbs. I choked easily with milk, I didn't know how to swallow the soup like all babies. We were then evaluated by a pediatric Nero who gave the diagnosis of an allegedly small developmental delay. Time went by and at one year I did not eat solid food, I did not crawl, I did not walk, I started walking without support at the age of three and a half on a smooth floor. I still do not go up or down stairs without support. I do not have enough balance. My weight was low because I only fed on milk, it was discussed at a medical meeting that I would have to have surgery to put a food probe directly into my stomach, where I would eat everything there and cause me to gain weight. I passed and I didn't walk, I already did physical therapy, occupational therapy and speech therapy, but the results were minimal and the problems continued to appear. I was diagnosed with mild autism at the time, did not verbalize, made repetitive movements, was selective among more things. The breast never gave up, and I also did not face everything with a smile on my face as I do today. At this moment my heart is in a very big effort and I can no longer evacuate alone without the help of very expensive medications. I need 50ML syringes and rectal probes to aid evacuation. I also use diapers, I still don't have any type of physiological control for the needs (urinating and evacuating) My current diagnosis is congenital transposition of the great vessels, autism, delayed brain development, severe chronic constipation (polymalformative syndrome) my syndrome encompasses several organs of the body and remains in a state of investigation in the European Union laboratory, waiting for the disease to be discovered and to give a specific name to this pathology, a syndrome with no name yet.
With the help of all of you, the journey becomes shorter and less painful and with the faith that we keep in God. Because WE ARE STRONGER TOGETHER
About the author
Com a minha mamã
My name is Catia Sofia I am 27 years old, I am the caregiver of my prince Dinis since the first day I was born I stopped working like all breasts to enjoy the first 4 months of maternity leave and to be able to accompany my son, but unfortunately due to the circumstances As for Dinis' health, I ended up taking care of him (4 years) until now, we didn't get the support we were supposed to be entitled to. We only have the disability bonus (63 euros) and third-party assistance (110 euros, this amount does not cover even half of Dinis' monthly expenses. Because Dinis has several essential and daily medications, you need a diaper 24 hours a day, you need of rectal tubes, syringes, feeds basically on supplements to maintain weight and not malnutrition, drinks lactose-free milk, gluten-free porridge, atopic skin creams among various things at high prices. All these things are necessary daily and where you cannot failing at all, with the support we have from social security, it doesn’t cover half of the expenses.The only source of income is from Papa Bruno who is the only person who works with the minimum wage, to whom we thank you for doing everything to make sure that we do not miss anything.
Budget and due dates
Com os meus papas ,sempre juntos na mesma caminhada
At this moment we received the news that I will be operated on, it will be the second surgery on the heart this time, it will be to start the preparation for later changing the ventricles and putting them in the correct position is a partial surgery will be done in two, because the risks will be much higher. We know that we will have increased costs after the surgery between material, medication and physiotherapy to recover the time that I will be stopped after the surgery. We will also be dividing the wall of our room so that Dinis can have his room and put all the necessary material from him (we already have the amount raised for this part of the house adaptation). Unfortunately we cannot have them both sleeping in the same room, they are both children and Dinis's brother does not understand the dangers of playing (jumping off him) ends up for example by taking his breath away and also damaging the peg wherever he goes. feed located in the belly. All these extra expenses that we did not expect for now are necessary, we need to adapt the house to the next needs of Dinis so that the pro-operative is a success. At this moment, we still need to raise us to adapt the bathroom, which is very reduced in space and where it will have to be adapted to the needs of the dinis (polivan adapted with bath seat and non-slip floor and "soft" wall for when he hits his head. derived from stereopitized movements), also with a mini support bench for the daily maintenance of dinis care such as enemas and peg disinfection.
All the value raised will be to adapt the bathroom to the needs of the dinis, to place a polyester covered in a material where it protects it from falls because the dinis derived from autism rejects the bath and its sensory does not accept water, the bathroom being very small and without the minimum conditions makes hygiene and daily maintenance of the dinis very complicated for all the medical support processes that we need daily, such as placing the probe to evacuate, cleaning the probe and bathing it.
