Saving Anderson's Life

My Name is Colm Cruz Guerra (formerly Tobin) and I currently live in the beautiful town of Clonakilty with my husband, Anderson. As some of you will know, Anderson has had some health issues in recent years, and I am desperately seeking your help to give him a better quality of life.

By way of background, I met Anderson in April 2015 and I knew, at first sight, that he was the one. I even told my friend after our first lunch date that ”I just met the man I’m going to marry”. Don’t worry, I wasn’t crazy enough to tell him that at the time! I just paid attention to every little detail he shared with me on that date.

Anderson is Brazilian, but has lived in the Republic of Ireland since 2014. He previously lived in São Paulo where he owned a design practice, but he is originally from the Amazon rainforest, and he grew up on a tiny stilt house with the Amazon river and the rainforest as his playground. (I grew up on Spike Island in County Cork, so we both have a huge connection to water).

Anderson is a very special man. He is kind and gentle, yet strong. He is smart, artistic, considerate and interesting. We were married within five months of meeting each other. I took his surname as we wanted to share a family name in a traditional way. 

Last September we celebrated seven years together, but sadly only three of those years were filled with the kind of Disney life and love, that would just want to make you puke! Because we were just Soooo Happyyy! 

Unfortunately, Anderson had a workplace accident in November 2018 and our lives drastically changed. The accident resulted in Anderson displacing two disks from his spine and at the time, it was understood that he would have to stay out of work for several months, but with physical therapy, he would fully recover. 

However, Anderson has not fully recovered, and our problems have only worsened with time. We lost our home in Dublin at the beginning of the pandemic and became homeless. We had to move to Cobh, County Cork where we stayed for 6 months with my family until we found our current home in Clonakilty. 

Anderson’s health issues have become debilitating. He has been bedbound 24/7 and is effectively a prisoner in our own home. He has joint issues, muscle and skeleton issues, heart problems, lung issues, digestive system problems, eyes issues, cognitive and memory issues, sexual problems and mood problems. He is in physical pain all of the time. 

I have had to change things even more in our daily life to give him the attention he needs. I haven’t been able to get back to work full-time after Covid. I have worked my whole life, but Anderson needs care and help throughout the day so I couldn’t return to full-time employment. 

I am currently working with a local Charity doing 19.5 hours a week as a care assistant. This is a community welfare project and I receive 230 euros per week. I love it there and the clients are amazing. It’s a place I can go, to focus on others and not on myself or Anderson’s problems for a few hours a day. 

 

Throughout the last 4 years, all of the Irish doctors we saw said things like “you’re just fat and depressed“ or my personal favorite “oh he’s from the Amazon? Has he been checked for syphilis? It’s Rampant over there”. They couldn’t see past Anderson’s depression and their biases, making Anderson believe that he was the problem and the main driver for all his issues including becoming fat and depressed. However, he persisted. We persisted. 

Recently, we decided to travel to Spain to seek medical attention there. We took out the maximum loan we could and traveled to Barcelona to get tests done which are not currently available in Ireland and to see a specialist without biases. After Anderson’s exams and clinical evaluation in Barcelona, in November 2022, Anderson got a confirmed diagnosis that meets clinical and neuroimaging international criteria. His issues are real, with a difficult prognosis ahead.

The main problem is part of an umbrella term called CERVICAL MEDULLARY SYNDROME (CMS) also known as “Craniocervical Syndrome” that affects an area called the CRANIOCERVICAL JUNCTION (CCJ). This surgical condition will require a few surgeries to decompress and fuse his cervical spine to his skull. And the nonsurgical conditions will require treatments before any surgery can be undertaken.

We have been told that the whole process - between 2 or 3 surgeries, recovery as an inpatient in Barcelona, recovery as an outpatient in Ireland and all the trips and accommodation will likely cost between €250,000 to €300,000. In addition to this, we will need to raise funds for items to help improve his daily life before any surgery. 

Despite our hardships, I am in awe at my husband’s resilience, his Integrity, his attitude, his fight, his strength and his patience. I am more in love with him today than the day we married.

Anderson will never be the same again. All the damage already done cannot be reversed. However, all the surgeries and treatments have the potential to afford him and our family a better quality of life.

Anderson cannot work or stay out of bed until he undergoes all the surgeries and treatments, as his skull is at risk of detaching itself from his spine and this is would be a terminal condition called Internal Self Decapitation.

I know it sounds awful, but we are happy to finally have a diagnosis having been in the wilderness for four years. Knowing the problem, we can at least work together toward a better future. Even though we are now on a road we would prefer not to travel, this is our journey. What our future looks like…. who knows? It is certainly not what we had planned. But we go forward together.

I am aware this is a huge sum of money to try and raise. I have been told this multiple times already. But what if it was your Husband or Wife or Child or Parent? Wouldn’t you do everything you could to help them?  So in order to fundraise this staggering amount of money we will need all the help we can get. 

If you can donate any amount of money. Please do. if 300.000 of compassionate strangers around the world donate just 1 euro we could have a chance. 

If you can share to raise awareness and ask your friends to do the same that would also be a massive help.

If you know us: you can drop us a text or pick up the phone, that would also be a massive support.

If you have any fundraising ideas please let us know. 

If you have any knowledge regarding sponsorship or support from companies, please let us know.

We are open to everything and anything. 

If you can’t donate money, but can offer your time and expertise, we accept;

If you can’t donate your time, but you want to donate something you made so we can auction it in your name, we accept;

If you can’t donate anything you made, but you can donate something you don’t need anymore so we can sell or auction it on your behalf, we accept;

If you can’t donate any unwanted possessions, but you can organize a fundraiser in your local church, with your family and friends, or any place you deem fit, we accept;

If you can’t do anything we mentioned, but you have a different idea of how to help, we accept;

If you want to buy items we have listed below Anderson’s immediate needs and we are happy to accept any assistance.

Thank you for taking the time to read this.

Colm Cruz Guerra

Our new family motto:

“I am no longer accepting the things I cannot change. I am changing the things I cannot accept.” (Angela Y. Davis)

List of Anderson’s immediate needs:

1 - 15.000 euros for a powerful powered wheelchair that is light enough for Anderson to use. This needs to recline to a certain degree as he can’t sit 90 degrees;

2 - 5.500 euros for a hand and pedal bike attachment to enable Anderson to get his body moving again (in the house initially) and do the physical therapy that will help his quality of life;

3 - 22.000 euros for an adjustable Power Lifting Bed Backrest, Adjustable Sit-up Back Rest Chair For Neck Lumbar Back Support With Head Cushion;

4 - 18.000 euros for extra large walk-in 2 seat bathing system including transfer equipment, shower heads, taps and physiotherapy mode.

Before the surgeries, Anderson will have to undergo a long journey to get his overall physical and mentally healthy in a good place to deal with the severity of the recovery process after each surgery.

To even be reconsidered for surgery at a later time he will need to:

1 - Establish a monthly communication between a local care team and Dr. Gilete's team through a local patient liaison who will provide progress reports from all the different specialists;

2 - Wholistic treatment plan;

3 - Find all local specialists to form a local medical team as follow:

* Find and Consult with a pain clinic with a focus especially on dealing with the psychological effects of chronic illness;

* Find and Consult with a Psychologist/psychologist/therapist specializing in patients with chronic illness/medical neglect/PTSD/and anxiety;

* Find and Work with a local patient liaison to improve your healthcare coordination;

* Find and Start a slow Physical Therapy regime with a physical therapist familiar with the Muldowney protocol administered to patients with ME/CFS and EDS;

09/11/2022 Confirmed Diagnosis in Hospital Teknon, Barcelona, by Dr. Vicenç Gilete[Spine Surgeon & Neurosurgeon] and Dra. Natalia Juan Serra[General & Intern Medicine, Specialised in Acute/Chronic Diseases], supported by Anderson’s imaging and clinical evaluation.

1 - [M53.0] Cervico Medullary Syndrome(CMS);

2 - [M53.2X2] Dynamic Craniocervical Instability(dCCI);

3 - [M43.3] Atlantoaxial Dislocation(AAD) - Right Atlantoaxial Instability(AAI);

4 - [M50.122] Cervical Discs: C5 - C6 Protrusion;

5 - [M50.123] Cervical Discs: C6 - C7 Herniation;

6 - [M75.51] Bursitis on the right shoulder;

7 - [M41.9] Scoliosis;

8 - [G89.21] Chronic Pain due to trauma;

9 - [G89.4] Chronic Pain Syndrome;

10 - [F43.12] Chronic PTSD Developed due Medical Neglect/ Dismissal/ Disbelief/ Wrongful Diagnosis

11 - [Q79.62] HEDS (Hypermobility  EDS (Ehlers-Danlos syndromes); 

12 - [G90.9] Autonomic Dysfunction/ Dysautonomia; 

13 - [G90.A] Postural orthostatic tachycardia syndrome (POTS);

The following needs more imaging to confirm:

14 - [LA07.0] Tethered Cord Syndrome(TCS)/ Occult Tethered Cord Syndrome(oTCS)

15 - [M53. 2X2] Cervical Subaxial Instability

Co-Morbidities of Anderson’s confirmed diagnosis that requires investigation prior to any conservative or surgical intervention:

16 - [G93.32] Myalgic encephalomyelitis(ME/CFS);

17 - [K90.0] Confirming or not celiac disease diagnosis;

18 - Confirming or not [Z91.011] dairy allergy and [E73.9] lactose intolerance;