Help our baby Morgan with Costello syndrome

 

We are 4 brothers and one sister and we are asking for help to support our family . Our little sister was born in february and sadly diagnosed with an extremely rare illness called Costello syndrome She is 4 month old and has spent most of her life in hospital . Our parents who are not well themselves have been dedicating all their time to care for her even in hospital and it has been a struggle for them and for us as a family . Here is a summary of Little Morgan since she was born .

 

This is Morgan Ojeerally. She was born in February 2021 at LHSC.

As soon as Morgan was born she was having a hard time breathing. She was sent to the NICU almost immediately after birth and her fight for life began. During a 5 week stay in NICU she battled hypoglycemia, difficulty breathing and inability to feed.

Many tests and procedures were completed during her stay and they discovered laryngomalacia(extra tissue around her voice box). It seemed to explain her noisy and difficult breathing. Genetic testing was done at this time for any prominent red flags. At 3 weeks old they attempted to perform a supraglottoplasty, they were also going to explore her lower airway for any further anomalies. Morgan coded during the procedure and they were forced to abort.

Morgan was managing well and with NG feeding (being fed via a tube through her nose into her stomach) we were safe to bring her home at 5 weeks old to provide care around the clock and continue outpatient appointments.

On April 22/2021 we met with ENT and Respirology, she seemed to be growing well and our team was questioning whether it was necessary for the laryngomalacia to be surgically corrected. It was decided to come back on April 26th for an overnight oximetry study. Our 1 night stay.

Blood gases were completed at that time as is routinely part of the study and her sugar levels were frighteningly low. It became quite apparent over the next few days that our 1 night stay had gotten quite serious.

Morgan spent the next 8 weeks fighting for her life. We prepared for her death on at least 3 occasions. Tests/procedures/medications were used and when we thought we had an answer, something else would go wrong. I could write a novel at this point of everything she has gone through in those 8 weeks. She'd been diagnosed with Right ventricular outflow obstruction and right ventricle muscle bundles, (This part of her heart primarily supports her lungs), Hyperinsulinism (producing very high levels of insulin causing low blood sugar), pectus excavatum, hydronephrosis, nystagmus, GERD, dysphagia, hypotonia, subglottic stenosis and laryngomalacia. Every time we left the hospital we wondered if it was the last time we would see her alive. We still do. 2 weeks ago our incredible team at LHSC successfully completed the bronchoscopy and found tracheomalacia (her airway was collapsing). Sick Kids in Toronto was consulted and the decision was made to reconstruct her airway and put a tracheostomy in place. On Tuesday June 22/21 at 830am we were told we were waiting for a bed. At 1100am that same morning we had a meeting with our genetics team. The samples that had been sent away a couple months ago had returned.

Morgan was diagnosed with Costello Syndrome.

As her doctor began to explain what Costello Syndrome was, the world stopped turning.

An extremely rare genetic disorder that affects 200-300 people worldwide.

Every diagnosis she had suddenly fit perfectly under the umbrella of Costello.

The world population is 7.9 billion.

Winning the lottery has better odds.

The odds of being struck by lightning are 1 in 500,000.

That evening we received a call at 7pm that Morgan was going to sick kids the following afternoon.

On Wednesday morning we received the call that Morgan was on her way to sick kids at 10am.

We hastily packed bags, arranged child care, and headed to Toronto.

We are on the waitlist for Ronald McDonald house but until a space opens we are staying at a nearby hotel which is very costly in Toronto.

She will be having a g/j tube placed first and then the airway will be addressed with reconstruction and a tracheostomy.

Her issues are quite complex and come with big risks so what we assumed would be approximately a 1 week stay is now indefinite.

Morgan will require significant supports as she grows. We have out of pocket expenses to cover not only while we are staying in Toronto but also when we are able to bring her home. Feeding pump and supplies/accessories, adaptive equipments such as special car seats/stroller, travel, accommodations, parking etc. The government reimburses a small portion of these costs but the majority is out of pocket and all must be paid upfront.

We are asking for help to cover these costs for our immediate circumstances and the 24 hour complex care that we will need to provide when we can finally bring our precious baby girl home.

Any contributions are greatly appreciated, big and small. Thank you for helping us and our sweet beautiful girl!