Ends at: 17 October 2021
With tears in our eyes, we're begging for help! Our daughter has been diagnosed with SMA type 1 - a fatal disease consuming her muscles and taking our child away little by little before our eyes. There is however hope. There is a gene treatment program however the cost is a staggering PLN 9 million (nearly €2 million). We are terrified! We have no hope of being able to collect such a fortune on our own even if we sold out everything we have. We need your help: please help us save Adele!
Smiling, talking, breathing, gesturing, LIVING. We usually don't even realize what muscles are responsible for and how important they are. That is, until they start to decline.
When Adele was born, we were so proud! She was such a cute, good-humored and healthy baby! Back then, we would look into her beautiful brilliant eyes and promise she will always be safe. Today we are looking at the same gorgeous eyes but with broken hearts because we are helpless. We cannot keep that promise anymore. Not on our own.
When she was just a month old, we suddenly realized that Adele was getting weaker. She no longer lifted her legs or smiled. Even her cries faded. This is when we given the crushing diagnosis, the diagnosis that has been ringing in our ears ever since. SMA type 1 - the most aggressive form of a cruel disease that steals away our child's strength day by day. Suddenly we were no longer a family boldly planning ahead, but desperate parents seeking help for our sweet little daughter. It's the only thing that counts now - to get help for Adele.
We cannot stop thinking that we were the ones who passed this flawed gene, that the awful genetic cross forced our daughter to fight for her life. Every passing day causes more muscles to decline. Every day it ravages her innocent little body.
The disease gradually strips her off the ability to move, to swallow, to breathe. It will not stop until it reaches its target - her little heart.
Currently Adele is on medication that slows the progress of the disease. It is injected directly into her spinal cord causing an immense pain. The very thought that this is how the medicine is administered just breaks our hearts.
There is one way out though, one chance of saving our little one. There is hope to which we cling to for dear life and are not going to let go as long as we can! This hope is a gene treatment which is administered just once and which stops the deadly disease once and for all. The treatment delivers an artificial copy of a gene responsible for motor functions. A gene Adele does not have. Sadly, the treatment's cost is over 9 million PLN. Even if we sold everything we own, it would still be a far cry from the necessary amount.
There is nothing left that we can do but share our story with you and beg for your help. We know it's a lot to ask and we know the road ahead will be rough, but we also know that it's our only chance to save our daughter. Terrified but hopeful, we are begging you: please help us save our Adele!
Natalie and Andrew, Adele's parents
You can also help Adele by participating in Facebook auctions
September 1st, 2021
Last minute terrible news from Adele’s parents!
We knew Adele’s condition was deteriorating fast, but we didn’t expect it to be quite so bad! Last week we consulted Adele’s case with a globally renowned Italian specialist Chiara Mastella who deals with physiotherapy for SMA babies. Her words shredded the hope of our daughter’s normal childhood to pieces.
Adele was the oldest but the weakest baby examined during the SMA conference. Doctor Mastella examined her and suggested it was time to introduce a tracheostomy tube and PEG nutrition because Adele had not grown or gained weight for a long time. Adele’s condition is terrible; the disease is literally draining the life out of our precious baby.
Adele’s nursery does not resemble a nursery at all. There is no room for toys. The tiny room is packed with the medical equipment needed to sustain our daughter’s life!
We are falling apart, again we are fighting for her life. Gene treatment is our only hope of saving her but we still need to raise over PLN 5 million (€1,5 million)!
Please help us to save her. Please don’t wait - Adele has no more time to lose. Every day counts!
August 30th, 2021
The charity collection has been active for 10 long months now. But we haven't raised even half of the total we need. The disease continues to destroy her small and defenceless body.
Adele chokes every day which scares us every single time. Instead of gaining weight, our baby is getting thinner and thinner. We watch over her little bed each night terrified of what could happen if we left even for a moment.
We are struggling not to think what else SMA will deprive our daughter of. Her nursery does not resemble a nursery at all: there is simply no place for toys. The room is full of equipment necessary to keep our little one alive.
We are moving heaven and earth to save our Adele. We shudder only to think of all the ways this disease makes her life miserable, our eyes are constantly filled with tears.
But we promised Adele, we will move heaven and earth for her we must not falter, we will never give up! We will do anything it takes to help give her have a normal life, but we still need a colossal amount of money to make it possible.
Current sum raised outside Poland amounts to PLN 1,7 million. We had already decreased the amount by 1 million before, so we are reducing it further by 700k now.
You have no idea how grateful we are for any and all the kind support shown for our daughter. There are no words to express our gratitude for your kind hearts.
With all our heart we ask for your further help!
August 2nd, 2021
It's our 9th month of fighting against SMA! Each month makes us realize how unpredictable and terrifying dangerous the disease we are facing is.
Some days ago something terrible happened. Adele choked while eating and we needed to restore her respiratory functions. We will never forget how frightening that was.
Adele's body slowly fails to work. Our precious daughter can no longer eat properly and has not gained weight for a while now. She does fight however, with all her might, and we, her parents, are fearful of what tomorrow might bring!
We are afraid the feeding tube is inevitable and she will not be able to eat independently anymore. Her esophagus muscles are dangerously weak already. The threat of losing those basic abilities forever hangs over our heads! We are overwhelmed with the amount of money we must raise in order to overcome that threat.
Several times a day, we watch over the collection counter. The counter which will decide our daughter's fate. It recently slowed down, crushing the remains of our hope.
Please help us! We’ve been collecting money since October, and we are not even halfway through. Please, do not turn your back on us. We are just a family doing everything we can to save our child! We cannot do that on our own though.
July 2nd, 2021
Adele's light is fading away - her muscles cease to work. Help!
How much suffering can a little child take? Adele's condition is deteriorating! Extremely tired with daily painful rehab, she is on the verge of exhaustion. An orthopedic corset, a standing frame, exercises, and a respirator make up her life now. Due to a sunken chest, she has trouble even breathing!
Among all this overwhelming number of activities meant to help her stay on the surface of life, we find little sparkles of hope: her scarce delicate smile and warmth of her little body when we hold her.
We pray for a miracle. The collection has stuck and keeps going on for too long. Adele has just turned one year old. With this pace, we will lose our only chance for a normal life for our baby: a life without a tracheostomy tube and PEG nutrition. We wish we could give her the most precious gift for her first birthday - a gift of a green collection bar.
If only all the shed tears could save Adele, she would have been all healthy by now. Please, help us break our daughter free from the SMA clutches! Please, be our hope!
May 31st, 2021
Adele is suffocating, her condition deteriorates - it's a race against time!
The situation is drastic! We are begging you from the bottom of our sorrowful and fearful hearts: please help us! Otherwise our daughter might not survive before the collection ends - the collection which has practically stopped increasing!
Adele started to choke while eating again, she suddenly turned purple. SMA wreaks havoc in her small body. Muscles responsible for swallowing are deteriorating quickly. Her chest is already dangerously sunken. Our daughter suffocates at night. Every night is a nightmare for both her and us.
We have just returned from the hospital where Adele was administered with a treatment slowing down the disease. Unfortunately there were as many as five injection attempts! Each of the attempts was painful - as syringes are administered directly to the spine. How much pain can a small child stand? Why does she have to suffer so much while have our hands tied?!
Me, her mom, who carried her under my heart - I could not calm her, could not take away her pain after the medicine was finally administered. Adele cried so terribly and for so long. The gene treatment we are fighting for on the other hand is administered only once in a lifetime.
The thought of not making it in time, of SMA winning and taking our sweet little daughter away haunts us. Please help us in any way you can. Please, help us save our little baby!
Natalie, Adele's mum
April 21st, 2021
Adele's condition deteriorates - help is needed URGENTLY!
Adele's condition is deteriorating fast! Swallowing nutrition proves to be an ever bigger challenge, Adele chokes on food and every feeding attempt means a great deal of stress for us! Her esophagus muscles are so weak, we are afraid of the worst - a feeding tube and PEG nutrition.
A tragedy can happen at any moment. We can see our daughter's life slipping between our fingers! Every night Adele’s breathing is aided with the use of a respirator! She cannot calm her breathing anymore. Her chest is sinking and Adele can breathe only with her diaphragm. The situation is not good, not good at all.
We have to move faster, so that Adele's breathing muscles and esophagus are still working, as no medicine will bring back what the disease takes away.
I don't sleep at night, I don’t leave her side afraid she might start to choke at any moment. I watch over her constantly. She is not herself anymore, she is just so exhausted, crying all the time, making my heart break over and over again. Being her mother, I am begging you, please help me save her in time!
Reduced collection sum: Thanks to the money raised by us elsewhere, we are decreasing the amount with PLN 1 million.
We are doing everything we can to collect the money as fast as possible. Unfortunately, the remaining amount is still gigantic. We are not asking anymore, we are begging you for help. For even a small payment, for sharing our daughter's collection link. We cannot achieve that without You!
March, 25th 2021
Race against time for the most expensive treatment in the world - a mother begs to save her little daughter!
SMA does not wait and shows us it proves every day it is ruling over our world. The ruthless disease is progressing fast killing our Adele's muscles. At the age of 8 months Adele no longer keeps her head straight, cannot sit or roll over. Breathing problems are the worst though - every night Adele is aided with a ventilator.
We are struggling not to let the disease take more of her abilities away by attending daily intense rehabilitation. Adele often cries not understanding what is happening around her. She does not understand why her mum cannot protect her.
The situation is critical. We are aware Adele ought to intake the treatment which will stop the progress of SMA as soon as possible. You can only administer it to a baby up to 13,5 kgs (30 pounds). We don't have much time left!
Unfortunately, the amount we need to raise is overwhelming. The collection moves slow enough for us to lose hope sometimes. We have no other choice but to beg for our beloved daughter again!
We have no connections or wealthy relatives. Good people who decide to help us are our only hope. Please help us save our daughter!